speak up! - questionnaire one€¦ · speak up! - questionnaire one welcome to the first speak up!...

621 Responses CP1 – Final Results

The Consultation Team 08/01/2010

Speak Up! - Questionnaire One Welcome to the first Speak Up! Questionnaire!

Q0a Please enter your individual response number: This information will only be used to monitor which members return this form. We will not use it to analyse the content of individual responses.

Dementia Dementia is a huge challenge to society and will increase rapidly in the future. There are currently 700,000 people in the UK living with dementia. In the next 30 years this number will double to 1.4 million. Dementia can be a frightening diagnosis to sufferers and their family and friends. Locally we want to raise awareness of dementia, the causes, preventions and treatments. We also want to make sure sufferers and their families have access to the best information, care and treatment when they need it.

Q1 Have you had any experience of dementia either personally or through a friend or family member?

305 (50.8%) Yes 295 (49.2%) No

Q2 Which of the following do you think can be early signs of dementia? (Please tick all that apply.)

541 (24.2%) Memory loss 466 (20.9%) Difficulty in communicating eg. forgetting words 430 (19.2%) Poor judgement eg. forgetting to wear a coat when going out in the

rain 358 (16.0%) Sudden changes in mood or personality 183 (8.2%) Lethargy 224 (10.0%) Depression 32 (1.4%) Other If other please state: 47 (100.0%) Filter: q2a ok Content: q2a 37: Confusion eg not realizing the time of day and whether meals have been taken. 43: Anxiety - over, for example, taking correct medication. Become very self centred. 51: Day dreaming, thinking of the past and neglecting the future. 54: Inability to cope with meal provision and sometimes basic tasks eg shopping or mail or obtaining money.



69: Loss of temper, cannot remember names. 76: Forgetting - people, or reason for doing something 83: Lack of social awareness - can be rude. Lack of judgement - concept of time. 98: Being confused. 99: Aggression often to nearest and dearest. 114: Difficulty feeding oneself 137: Compulsive behaviour eg washing hands continually, buying same product 2 - 3 times a day. 151: Confusion and panic 161: Childhood memories prevalent 166: Confusion about times of day and night and days of the week etc. 173: Long term memory often fine, short term - in minutes quite forgotten everything. 189: Repeatedly doing the same jobs. 205: Inability to do simple tasks eg boil a kettle, use a microwave. 207: Swearing 225: Hyperactivity 226: Aggression, wilfulness. 228: LACK OF MOTIVATION - i.e. to clean house, go out, eat, and cook. 235: Focusing on the past and lack of interest in the present. Hygiene lapses and other daily chores suffering and being slower. 242: Failure to recognise know people. 270: I would think probably in a small way all the above. 276: All 296: Difficulty in organising eg household bills, car tax. 300: Don't know 302: Confusion and talking about past events as if they are present. 316: Short term memory loss 321: Spend, spend, spend on a credit card thinking someone else will pay (i.e. freebee) 325: Confusion 334: Poor concentration 348: Falls at home and outside, unexplained even after thorough hospital medical checks where patient was found to be, at first, physically fit. Further symptoms gradually occurred. 416: Forgetting how to switch car lights on, although still driving well. 417: Weight loss 419: Not having anything to keep the brain active, eg a hobby, gardening, knitting etc. 435: No short term memory. 441: Many more symptoms. Needed to be spotted earlier. 472: Not eating or washing, personal hygiene. 507: Going to bet at all times in every day clothes. Arguing about time of day. 542: Loss of motor skills, unsteadiness 549: Forgetting simple personal hygiene tasks. Repetitive questions - eg what day is it every 2/3 minutes. 579: Living in the past. 582: Irrational fears or miss-naming items. 588: anced, sleepless, and unab 604: aggression 609: Confusion

Q3 If you thought you were going to suffer from dementia in the future, which of the following would be your biggest worry? (Please tick one option.)

241 (39.2%) Losing the ability to live independently



4 (0.7%) Depression 147 (23.9%) The impact on loved ones 32 (5.2%) Moving to a care facility 121 (19.7%) Not having control over your actions 63 (10.2%) Memory loss 7 (1.1%) Other If other, please state: 19 (100.0%) Filter: q3a ok Content: q3a 51: Isolation is the fore runner of most of the above. 54: Gradual loss of ability to cope successfully. Geographical isolation from family. 69: Forgetting using toilet. 88: The first four considerations I consider as equal and biggest worry 114: Embarrassment 176: All of the above will be worried and scared. 226: Financial 281: Being open to abuses: physical and mental 291: Could be all the above 348: Ability to pay for good quality care for period of this possibly needed. 441: Sorry all would have dramatic impact, could not just pick one. 450: I would not worry because I would not know what was happening. 453: The knowledge in the early stages that something is wrong. 506: All have impact on every option. 521: Not able to look after myself 569: Also Depression, The impact on loved ones, moving to a care facility, not having control over your actions and Memory loss. 574: Also moving to a care facility. 577: Also moving to a care facility and not having control over your actions. 588: All of them!

Q4 Do you think that dementia can be prevented? (Please tick one option.)

65 (10.8%) Yes 260 (43.0%) No 279 (46.2%) Don't know

Q5 Which of the following do you think might help put back the start of dementia? (Please tick all that apply.)

341 (19.0%) Healthy eating 116 (6.5%) Low cholesterol 359 (20.0%) Physical exercise 579 (32.3%) Keeping mentally active 164 (9.2%) Quitting smoking 232 (13.0%) Drinking no more than the recommended daily amounts of alcohol

Q6 We want to improve local dementia services. In your view which of the following might be helpful in treating dementia? (Please tick no more than two options.)



197 (16.7%) Improved access to trained nursing, medical and social care 207 (17.6%) Health and social care services working together to deliver care 75 (6.4%) Enhanced provision of good quality information 42 (3.6%) Development of individual and / or group therapy sessions 72 (6.1%) New technologies such as telecare monitors (allows a person's well-

being to be monitored through sensors which activate alerts to staff in a response centre)

373 (31.7%) Early diagnosis 157 (13.3%) More support for carers / respite 54 (4.6%) Medicines

Q7 If you wanted to find out more information about dementia where would you be most likely to look? (Please tick one option.)

99 (16.1%) Local Community Mental Health Team 59 (9.6%) Department of Health website 111 (18.0%) NHS website 4 (0.7%) East Riding of Yorkshire Council website 40 (6.5%) NHS Direct 229 (37.2%) Local GP 20 (3.3%) Charitable organisation 5 (0.8%) Citizen's Advice Bureau 2 (0.3%) Local council offices 46 (7.5%) Other If other, please state: 57 (100.0%) Filter: q7a ok Content: q7a 9: I would try to find information at the library. 43: Local Alzheimer's Society 46: I would expect my GP to put me in touch with other services. 49: Google website 50: Any internet site found through google 51: A dementia advice unit accessible by telephone 54: Using search engines - research dementia 69: Library books on mental illness. 83: Internet Alzheimer’s Society 87: Internet websites and local library 88: On general websites - my mother had dementia and I got very little information from the above 92: Internet search engines. 93: Internet in general 143: Google 147: Internet 151: internet 177: Google 207: Dementia website 220: The internet in general



236: Goole 241: Internet in general 253: I personally approached my aunt's GP but did not get a lot of help. 263: Internet 264: Google search, then look at most popular links 275: Alzheimer’s site or Age Concern 277: Internet search engine - Google 280: "Google" Dementia 282: Other internal websites such as A-Z, Wikipedia. 295: Internet: Google search 299: Internet 323: libraries 335: www. search for all countries 346: Friends and family 357: Internet sites 373: Internet 441: The Alzheimer's Society 442: Alzheimer’s Association 452: Internet - Google 466: Internet (larger search, more knowledge). 509: Internet 526: General internet 545: Internet 553: Internet 554: Internet 559: Web in general 565: Search Engine results 569: Also Department of Health website, East Riding of Yorkshire Council website, NHS Direct, Local GP, Charitable organisation, Citizen's Advice Bureau and Local council offices. 574: Also Local GP. 575: Google. 576: Not everyone has access to a computer or know how to use one. Although these websites are useful if you know what to do. 588: The internet concern about his state of 589: Google 591: internet forum 593: Reputable internet sources 602: Google 608: internet 609: Google

Q8 If you wanted advice on the support services available for those with dementia where would you be most likely to go? (Please tick one option.)

185 (30.1%) Local Community Mental Health Team 27 (4.4%) Department of Health website 49 (8.0%) NHS website 28 (4.6%) East Riding of Yorkshire Council website 19 (3.1%) NHS Direct



254 (41.3%) Local GP 19 (3.1%) Charitable organisation 18 (2.9%) Local council offices 16 (2.6%) Other If other, please state: 25 (100.0%) Filter: q8a ok Content: q8a 14: Social Services Department 15: Web 49: Google website 50: Search on google 88: Social Services 93: Not sure! 134: Maybe a flyer on pointers to look for if you suspect any worries. 195: My family 207: Website 253: In my case I approached care homes and found a good one. 264: Local health centre 275: Internet 302: Google. 346: friends and family 408: Family 441: The Alzheimer's Society 465: Dementia sufferers support group/organisation 540: I would use Local GP to access social services, mental health and occupational therapist 550: Social Services 569: Also Department of Health website, NHS Direct and Local GP. 575: Google. 576: GP to refer to the most likely organisation which should be linked to other department and avoid carers having to go to individuals for help. 587: Doctor first and then to whomever he advised me to for and see. 588: The internet 604: internet

Q9 Are there any comments about dementia that you would like to make?

110 (100.0%) Filter: q9 ok Content: q9 8: Limited experience means I am not very knowledgeable so the value of my comments is limited. 14: Easier access to full term care without families worrying about financial implications. 20: No 26: I would like to see it treated seriously by everyone in the community and treated with patience and compassion. 34: No



43: Awareness in hospitals when dementia sufferers are treated the same as everyone else i.e. a barrage of questions they cannot cope with in unfamiliar surroundings. 44: Support for carers needs to be improved, care firms which are supposed to assist the carers often have poorly trained staff. 51: People are aware of the onset of dementia and help is necessary at this stage to avoid depression which accelerates it. 54: My mother died in June 2008 after a long period of declining dementia. She became a different person who was unable to care for herself. 66: Have found in various areas a lack of communication between nurses/carers, or staff moving and no one taking the case for quite a while. 76: Very poor conditions for sufferers and carers. Both help and information regarding help, difficult to obtain. 77: There needs to be more support for families and the carers of the ill. 82: Some carers have terrible stress - support is vital 83: Early diagnosis is crucial so preventative medicine can be used. Why is dementia not treated as an illness but the sufferer punished - lack of care until home is sold etc. 88: My mother died 5 years ago, she had dementia for four years before, and I had many problems getting attendance allowance for care help. After two years and three applications she got a part allowance. 96: Unfamiliar faces and surroundings reinforce the condition. Regularity and personal (1 to 1) care would help fight the condition. 98: Local GPs to understand different between mental health issues and being difficult(my past experiences). 105: Recent research indicates a greater understanding of preventative steps - and treatment 107: It is likely that new breakthrough in treatment and diagnosis will be made in the not too distant future. Dementia is only now getting the research it needs. 114: A more helpful response from people who work for the Council when carers ring for help. 116: More support for family in caring for a relative with Dementia is needed. 122: I think we need paid staff or volunteers to chat with patients in a positive, respectful and caring way. Existing staff do not seem to always have the time. 123: No. 124: Not enough research, not sufficiently funded, not a Government priority 125: My major concern is that sufferers are not properly diagnosed and inadequately treated when they end up in primary care, they need specialist care from specialist professionals. 140: Only comment is that 24/7 carers should be given more help and get a decent payment for having to give up work and tend a loved one. 151: The mental health service is utterly inadequate patients and carers left to their own devices early intervention not looked at as an option. 154: This is a major worry especially for carers and given that people live longer 169: It would appear to be a very frightening thing to have happen for the person and their family, more support is necessary. 173: A great burden when one with dementia is 84 and carer is 85 - DOMINO effect on all other generations. Both children in 60s, and grandchildren in 40s. 184: Address them as 'intelligent human beings' because that what they are. 186: I have limited knowledge of dementia - it was my friend's mother who suffered. 195: Need for more knowledge to recognise its condition. 197: Multi disciplinary teams must be essential when caring for people with dementia. This would help to prevent inappropriate responses to some behaviours which may be displayed. 202: Age and loneliness must play a part in dementia. 203: Imperative more support given to carers.



207: My mum had dementia and doe four years no one listened to me until I was at breaking point even then the care was awful and unacceptable 208: Support for loved ones (carers) who in most cases have no previous knowledge of this condition and find it most upsetting when they receive no recognition etc. How can they help the 'patient' 211: As I have a relative with dementia I think early diagnosis if valuable 218: Not enough information to the general public of how to recognise signs of dementia 225: In my experience lack of social interface (i.e. Loneliness) appears to aggravate condition. 226: The long term impact on family and friends. The isolation of carers. The financial worries. The lack of co-ordinated care. The postcode lottery. 227: Suffers must be on the best medication as soon as possible and not be made to wait weeks for tests etc. 235: It certainly requires more research and a more sympathetic and understanding care. 239: Great understanding is needed by all who work and who are in any way involved with Dementia as stress is easily built up. 249: It puzzles me why some people in their 90's and over 100 are so mentally alert and others younger are not so lucky. I haven't researched dementia but I have read horror stories of it in magazines where some reader has a relative who is a victim of it. Even in their 60's. 250: Not easy to deal with person as they do not think anything is wrong. 254: You need to know that the person has dementia - early stages can be misleading. It is vital to care for the person in an appropriate way, eg suitable clothing; knowing how to deal with the 'angry' times. 256: Nursing homes who look after dementia patients do not have enough staff to give proper care. 264: Scary, worrying. Support needed for patients, carers and staff including funding for specific training for staff. 276: No 280: Awareness of identifying early signs of dementia should be heightened. 289: Funding in all aspects needs to be increased 296: Found provision of care homes for dementia patients few and far between. Often patients are made to move from a home they are settled in as the dementia develops. 301: No 313: Medical intervention eg pills, therapy which will help delay the worst symptoms and thus help keep the sufferer at home, with help, should be a priority. 323: No 324: No 331: Yes I visit nearly daily an 83 year old lady with the start of dementia. I find it so important to chat and not keep correcting her but basically enter her world and by chatting away she becomes informed about shopping etc. It is so bad as sometimes she remembers easily about things, I find it simple not to force her to remember but put a note on her note pad which she is very happy to quote her days important issues. 334: Respite for carers needs to be readily available and without cost. Carers need to be strong enough to cope and therefore justify this sort of investment. 348: The cost of good residential care is very expensive and, although much appreciated by patient and family, cost can become a considerable worry as time progresses. 353: I am not that familiar with this disease. 357: God forbid it ever happens to me! 358: No 359: No. 363: I am concerned that this is a huge problem which will and is an enormous challenge, especially care for sufferers and family.



368: There are a lot of options here relating to websites. In respect of someone developing dementia, there is any assumption that they will have a computer and be computer savvy! It is likely in fact that the majority of sufferers will not have a computer? If they had it would have kept them even more mentally active and they would not be in this predicament. A website is therefore, by definition, not a good place to offer advice on this subject. 369: I feel that as dementia develops the carer needs as much support as the patient. 370: It's not something I know much about. More info would be helpful. 372: More and clearer information should be available. 388: I think drugs probably make it worse. 406: When feeding someone with dementia in a care home or hospital they need one to one. 408: Rely on family to be aware of symptoms 412: To promote awareness of the early signs and dispel the stigma of the condition by giving it a more "friendly" name. 416: Initially my father in law was very distressed at not remembering. Later when he could no longer recognise us, he was "in his own little world" and apparently quite happy 417: There needs to be advice, care and treatment available uniformly in the whole of the ilk. Not a postcode lottery. 419: The important thing is to have something that uses the brain. 426: Both my mother and father have dementia. Mum died at the age of 57 now I have to watch as it also takes my father. 432: Why is all the care centred on care in the home? I would like to see support for those who have had to place family member in care eg you need to do this... this... that etc and how and where to carry out these necessities 435: It reflects problems on immediate family and causes much sadness and depression on the carer. 441: If a loved one suffers a disease like cancer they are looked after by the NHS until the end. If a loved one suffers with a disease like dementia and when they are unable to speak for themselves. They are put into nursing homes. Usually the staff are not trained to deal with dementia patients so they do not get the care they desire. To top it all they are robbed of their life savings. I go back to the beginning, if these patients had Cancer this would not happen! 442: My friend who has answered this, has a husband who has Alzheimer’s very badly. So the above are how she has found the system. 450: Dementia sufferers need the reassurance of 24 hour companionship - which makes trying to support them if they have in their own home is not feasible, if they are alone. 462: The little I know tells me people suffering from dementia are frightened. 472: Carers, eg husbands, wives, sons, daughters need more help at home and themselves cared for. Because they are stressed and made ill due to looking after a loved one with Dementia by themselves. And told about all benefits services while doing so. 477: More help is needed. 487: Will Dementia patients and carers in the East Riding of Yorkshire even be able to benefit from the dedicated help from Admiral Nurses? 507: I think all carer's should have help on hand and the help of rest bite's and day care without having to go and beg for it of the doctor's. 508: No 512: Dementia is a really nasty illness and people that get it sometimes don't realise it's happening and they often get upset with those who help 513: I hope it doesn't happen to me! 516: Dignity and respect must be the key words when treating any person with dementia. 534: One needs patience to help people and remember that the sufferer cannot always reply promptly. 535: No experience, but we have an excellent GP who would provide information and contact details if needed.



542: Nursing care and residential care drastically needs to be improved 544: This is a dreadful disease. As much money as possible should go into the provision of the drugs such as * to suffers which help them to live as normal life as possible 549: It is so easy to recommend 'drugs' etc but what about then side effects 550: Very difficult for carers than physical defect. Much more difficult to handle. 559: N/A 561: No 564: For care services that are being provided to those suffering from dementia to be less institutional and more person centred. 576: The support for family of patients need as much support as possible and help with making the right decision. Often the family are very stressed and can't think clearly what's the right thing to do. 579: People should be allowed to stay in their own homes with support from Social Services, NHS professionals, carers, etc, instead of going into care homes and becoming institutionalised. 587: I hope I never suffer from it but I don't think there is a cure as yet. 588: I hope that I am never afflicted. More thought should be given to the role of the medical profession in decisions affecting dementia patients. If I am in a physical state of being OK but my mind has gone, and I don't know who I am, where I am, or why I am there, I want society to accept that I would perhaps far prefer to be put to sleep - just like you'd do to a loved pet. The idea that God gives life and therefore only God can take it away is a fallacy that the human race has to leave behind and move forward into thinking about humans first. A person with humanity would not wish to keep alive those suffering from severe dementia but allow them to go quietly and peacefully, with the medical profession's help. Doctors say they can't 'play Go 596: From my own experience, GP's are too quick to prescribe medication which I believe exacerbates the problem. The more we know about it the better we can treat, through a holistic approach. 609: Support for long term carers (usually a close family member) is an urgent priority. 612: No 613: Often the stress that carers feel is overlooked. We should be more proactive in supporting them. 620: Only that it has to be taken more seriously in society, as people tend to live longer, pensions and other sureties look like being in some jeopardy, and insecurity really exacerbates dementia. Anything you can do to help it I would love to be able to support more actively. Long-term Conditions Long-term Conditions are health problems which need ongoing management over a period of years. These are conditions which can limit lifestyle and include diabetes, heart disease and chronic breathing problems. There are 15.4 million people living with a long-term condition in England at the moment. Numbers are expected to rise because of an ageing population and unhealthy lifestyle choices. Our goal is to improve the length and quality of life for people diagnosed with long-term conditions in the East Riding of Yorkshire.

Q10 Have you had any experience of long-term conditions personally or through a friend or family member?

389 (63.7%) Yes 222 (36.3%) No



Q11 Self-care and self-management are becomingly increasingly important in order to improve well-being, maintain independence and improve quality of life for people diagnosed with long-term conditions. We want to encourage people with long-term conditions to be more involved in their own treatment and care and support them in, or near to their own home. Do you agree or disagree with this approach? (Please tick one option.)

569 (92.8%)

Agree 15 (2.4%) Disagree 29 (4.7%) Don't know / Have no opinion

Q12 If you were to be diagnosed with a long-term condition, what do you feel would encourage you to become more involved in taking care of your own health? (Please tick all that apply.)

514 (26.6%) Having enough information to be able to make the right decisions about your health

161 (8.3%) Having access to knowledge about healthy lifestyles 385 (19.9%) Gaining new skills and confidence to self-manage your condition 298 (15.4%) Talking to others about your condition (support / self-help groups) 309 (16.0%) Getting the right equipment 266 (13.8%) Having 24 hour advice lines to help combat feelings of isolation

Q13 If you required treatment / care for a long-term condition would you feel comfortable receiving care from each of the following professionals? (Please tick one option per row.)

Yes No Consultant 512 (97.3%) 14 (2.7%) GP 547 (97.3%) 15 (2.7%) Community Nurse 500 (96.9%) 16 (3.1%) Social Care Worker 311 (65.6%) 163 (34.4%) Care Manager 270 (60.0%) 180 (40.0%) Voluntary Care Organisation 326 (70.1%) 139 (29.9%) Community Pharmacy 330 (70.4%) 139 (29.6%) Other 48 (35.0%) 89 (65.0%) If other, please state:



20 (100.0%)

Filter: q13i ok Content: q13i 29: Don't know enough about them to choose 'yes' 35: Personally I would get any help available. 52: District Nurse 57: Family 106: and voluntary care organisation - I don't know enough about these organisations 176: Mum and dad, family etc. 250: Would not know if capable. 253: Family 256: Occupational Therapist at hospital. 276: Relative or friend 282: Medical 'Specialists' 329: Reliable well known neighbour 335: Alternative medicine. 421: NB: Yes answers (treatment) No answers (Care) 442: Family, if they are willing. 453: Don't feel able to reach a conclusion - need more clarity. 462: Family 564: Occupational Therapist, Counsellor. 587: No 610: Physio. Osteopath. Alexander Technique Practitioner, Reiki Master, Tai-chi Instructor, Yoga teacher

If you answered no to any of the above can you please explain why? 215 (100.0%)

Filter: q13j ok Content: q13j 1: Would only trust consultant, nurse, doctor with my long term care. 5: Worried about being with people not known to me. 9: I would feel that staff in a pharmacy would not be knowledgeable enough. 12: I have ticked 15: Poor knowledge level and working with a budget. I world regard "other" as just friends. 17: Pharmacy not always helpful! 18: Not enough in-depth knowledge over individual conditions. 23: Just think advice of the ones ticked should be enough help. 26: Feel that most GPs are far too busy to make regular visits. 32: Don't know what a Care Manager does. Although a pharmacist is trained, don't think would necessarily have all the knowledge necessary. 33: Would prefer medically trained. 34: Not enough information 36: I do not have faith in health care services and medical professionals to believe they would do their best for me. 40: Prefer to go to the best qualified people



48: Cautious of professionalism and ability. 49: Don’t entirely trust social services. Don’t know what a "care manager" is. 51: I don't know exactly what involvement they would have. 54: I prefer the trusted opinion of professionals. 55: I would want people with medical knowledge to treat me. 56: Not a lot of faith in Social Services and the like. 58: Not really had any experience of/with the above services. 59: Lack of confidence in their ability. 60: From past experience I have no confidence in the present social services. 62: I don't believe social workers are experienced in health care. 70: Don’t know enough about them! 71: Do not have specialist knowledge on the condition 72: Not fully trained and qualified person. 75: Do not want too many people involved 77: No trust 78: Not sure of the role or qualification to help 79: I would not think the pharmacy had the expertise to advise 82: They have had press 83: Long term condition requires qualified medical advice and some would not provide it. 85: Not too sure about quality of care from such sources 90: I feel I know my GP, community nurse etc rather than any other 93: Not sure they would have correct training. 96: Social care workers would not be medically competent. Voluntary groups have variable funding and cannot be relied on for long term help. 97: Social Worker and Care Manager - don't feel they could provide the right type of care. Need to be trained in specific areas of help. 99: Because I would not trust them to have my personal welfare to mind - they say they are always too busy. 105: Care manager, community pharmacy - their roles can be fulfilled with better qualified practitioners 107: Basic question of competence and privacy 109: Would prefer continuity (same carer) 110: I would not be completely sure that a pharmacist/social care worker had substantial experience. 112: Not professionals. 116: I would not feel they had enough knowledge in caring for me. 122: There would be an issue of privacy in a community pharmacy 123: I would think they were more involved with paperwork. 124: Any more than the two ticked would depend on the diagnosis 127: Care manager too remote. Voluntary care, possible lack of professionalism 130: Don't think pharmacists are qualified enough in this field. 131: I do not think they have the skills required. 132: Care Manager Administrate only. Other: Uncomfortable with the unknown. 134: Community pharmacy: - would of thought they were busy enough. 136: Initial worries centre around confidentiality. I would require assurances that they operate to the same professional standards as the others. 137: These people/organisations are often too busy, whereas local health centres seem to care more about their patients. 139: I would not go to a chemist 143: Medical conditions require fully qualified medical staff 145: May not be qualified. Confidentiality concerns



146: Don't know what a care manager is need to know more 149: Care manager - don't know what they do. Voluntary CO - not necessarily trained or qualified. Pharmacy - can't see what they could do. 152: Sometimes people feel that people don't have time to listen 154: I feel the first two are best qualified to offer medical advice about long term conditions. The others however will meaning fall below their level of obtaining one might accept advice on short term problems from say a pharmacist. 155: From past experience have no confidence in some groups 159: Treatment implies medical knowledge 167: Don't feel they are qualified to administer the relevant drugs and treatment. 168: Too many people involved in care could cause confusion. Too many perhaps differing opinions and a feeling of having little say in your own health care plan. 169: I would want care only from doctors/nurses who have trained and have medical qualifications. 171: Lack of confidence and social workers 172: Never had any time for social workers from past experience. 173: I assume there would be family involved so who would manage the situation??? It is a good question* 177: No idea what a Care Manager is. I distrust the role of voluntary organisations in providing public services/Pharmacies are not care organisations. 178: Don't know much about Care Managers. Social Workers seem to be over burdened and stressed to do the job properly. 183: I don't really know what a social care worker or a care manager are. 190: Does not sound like a service that could be provided in a safe (i.e. confidential) place. 192: They would not necessarily know everything about my condition. 194: It would probably not be necessary in addition to the others. 196: Not sure how they could help. 201: If too many organisations are involved, confusion starts over illness and treatment. 205: Possibly not professional enough. 207: Both my parents were badly let down by NHS/GP and subsequently died although I pestered the above with no luck. 208: GP a little Ad Hoc. Have past experience of no real interest. Social worker would be a stranger. Would need more information on this. Don't they have enough knowledge? 211: Community pharmacies might not be easily accessible for patient or family. 212: What is a care manager? 213: Social worker may not be fully aware of new treatments for condition. Care manager evokes position of management not medical 216: I would want care form a professional trained in medicine 217: Consultants seem to have little interest in individual care. In my experience care worker/care manager provide a poor service should be avoided. 218: Hospital: Nurses on help lines who provide advice to individuals on their specific condition/needs (medical) 220: I prefer to deal with professionally qualified people who both care and have the time to care. 226: All may be unknown (as indeed the three ticks may be) Too bureaucratic. 235: Voluntary care fine if not plain do-Gooding with no real care. A Hospice would be 'fine', but some lesser organisations could be more of a hindrance. McMillan good too. 236: Feel better with own doctor. 238: I may have some concerns as t other qualifications/regulation of these. 241: I cannot see what a social worker or care manager can do to help manage a condition. I would possibly need them when I cannot manage - they have limited knowledge. 242: Q14 - Think I would expect more voluntary help.



248: No faith after a heart attack. I have experienced most of the above. 256: I have received better information and care from my OT than any other person. 257: Not qualified enough. 259: Don't know what a care manager is/does. 261: Unless the social care worker knew all about the illness. 264: Would want it to be someone with right people skills. Appropriately trained and knowledgeable. Without feeling guilty that they were already overstretched. 270: Would not know about conditions enough to give positive information. 275: I have had experience of dealing with Community Nurses and they have little or no experience with dementia sufferers. Social Care Workers are always too busy. 276: Trust! 280: Current lack of confidence in limited range of knowledge due to excessive work load issues. 289: trust and expertise in a particular health problems 292: I would like to be looked after by a professional i.e. someone paid to be an expert on my condition. 293: Because living 3 miles away from the nearest pharmacy I get my prescription from GP. 294: I prefer to be independent as far as possible. 298: I think social workers cause people extra problems (just read the papers to understand). 300: Don't know what care manager does. 301: Can't thing of any other. 303: They need to know you not just your condition. 306: Experience and qualifications 308: I don't know what role they have in this. 309: usually unknown personally. 313: The need to retain as much independence as possible. 315: I would prefer qualified medical advice. 318: I would rather keep it local and personal 320: My experiences with 'care' workers leads me to think that cost and not care are the driving factors in their services 321: Maybe too many 'cooks' involved. 322: I'd prefer to receive care from a medically trained professional 325: It would depend on the individuals concerned - their competence. 326: Pharmacy would be fine to dispense medicine but I may need other support to explain my needs 327: Because they don't seem to get to know you that well. 334: Long term conditions need, in my opinion, to be looked after by professionals who understand the needs of patients and will know about any developments in treatment. 339: Because I have no knowledge of this organisation. 341: I feel they would not have had sufficient training. 344: Confidence in professionals. 346: You never get to see the same doctor so are always given different advice and treatment is not consistent 348: Preference for people who know me personally or have professional knowledge of needs of condition. 349: Don't know enough about these people to trust them. 353: Little faith in the NHS - apart from Basic Diagnosis and Care 355: For the most part I would prefer to have previous knowledge of the person 357: A medical problem should be treated by medical people i.e. doctors and nurses. 358: My experience of NHS, particularly GPs and social care is that I do not think their judgement and/or they are massively under resourced. 363: I may be concerned about the extent and quality of care available



369: Our nearest pharmacy is a bus/car journey away - too far for serious condition to travel regularly. 372: I do not feel that a care manager or a voluntary care organisation would have the necessary expertise. 374: Bad experience in past - Apathy 381: Don't know why. 385: I would be worried that they might not be adequately qualified/experienced 388: I'm too independent. 394: Not sure what a care manager could add that would be different from the others. 395: The involvement I had with care workers when my mother needed their help. One carer put my mother's medication out of her reach and she was not able to take it when she needed it. This woman really upset my mother and wrote a report which was untrue. 404: Would not feel comfortable talking in a pharmacy 406: I would like to be cared for with people I know. 409: I feel that they would try to organise my life completely. 412: Prefer medically qualified person 413: I feel that my GP and surgery staff have always been dependable in the past. 415: Consultants usually don't have time or know the patients. 416: Social Services appear as "the enemy". They are seen as putting people into "homes" against their will and taking children from their parents. 423: Unsure whether social workers and pharmacists are qualified to treat long term illnesses. 428: What is a care manager? 431: Prefer to be treated by professional. 435: Social care - too intrusive - not always a good representative. Care Manager - ok in care homes. 438: I do not feel that these people may be adequately qualified to help. 441: This would depend on their qualifications and who they worked for. If a private organisation then I would be very wary. 448: I don't know much about these professionals so I would have to know more before I could trust them. 451: I have no faith in Social Workers. Care Managers pass things down for others to sort out. Don't know who the others are. 452: Would not feel that they had the appropriate training/experience nor the correct accountability if the treatment was inappropriate/incorrect. 454: Wouldn't feel they were qualified enough. 459: Pharmacologists are only trained in science/diagnosis of medicines, wouldn't be able to deal with more complex mental conditions especially. 460: I feel the first three are the only ones qualified; the remainder are there to carry out care plan, decided by first 3. 462: Unsure of how they can help. 464: Only having had dealings with social workers twice I found very patronizing, didn't find caring at all when it was needed. 466: I don't understand the role of a care manager. 467: Feel not qualified enough. 469: If a Care Manager was involved I assume that the others I have ticked would be dealing with me already and the same would apply to the other two I have ticked. 470: Historical evidence, lack of experience. 476: Not their speciality. Don't imagine that they know as much as carers, eg GP. 490: Lack of confidence in social care departments 499: If you go to a pharmacy you often have no privacy and you do not know who you are speaking to - they have no knowledge of your medical history. 504: Because they never seem interested



507: Because a few of the carer's do not know a lot about things. 513: Don't know who they are, what their qualifications are or how they could help me. 515: I feel that outside voluntary organisations can sometimes be an invasion of privacy 516: unsure of role played. 518: I don't know what a care manager is! 519: Because they will not have personal conduct. 520: Social care workers differ so much. The good are excellent; the bad often upset the patient. 527: Social care invokes a stigma Voluntary Care means charity to me, which I wouldn't want 531: From things you hear in the media - their intentions or actions are not always for the right reasons. 533: I don't know much about social care workers, but always thought they were aimed more to people in deprived areas or at people with children with problems (adult or child). 543: My experience of social workers is not good 544: I would prefer to have help from a qualified medical person 545: Not sure of their role 548: GP and Pharmacies are too focused on giving you drugs so as to meet their targets from the PCT. 549: Consultants are simply to busy to really get involved. I feel they are 'money oriented' 563: They would not have intimate knowledge of person concerned. 564: I would see a Care Manager as being less experienced in the role of providing personal care, no expertise in this area, more of a theoretical background. 568: Would think he would have the relevant information to deal with managing my condition. 571: Don't know what a care manager is. Are voluntary organisations in full knowledge of condition and up to date on latest care treatments? 573: My experience with the "social care group" in West Yorkshire was poor when my mother needed support for dementia. 575: Don't believe social workers/bureaucrats are competent. 583: Have doubts 586: Question if they would have the time or in some cases interest. 587: Because I would rather be looked after by my GP and a nurse to keep an eye on me. 588: se or disaster. So they could 'play God' and allow the severely damaged persons le to be coherent. If 593: My perception of social workers generally is very poor 594: The long term condition I have experience of is epilepsy, which is a medical condition. I wouldn't feel comfortable in speaking to non medical people 596: I have no faith in the medical profession with regard to this illness. Social care workers talk a lot but seem to have little effectiveness in my exp 597: I have no understanding of the roles of the these professionals in such instances and my opinion of the general quality of work done by them, either p 598: Social workers are a waste of space 599: It's a question of confidence 600: Consultant would be too remote and I don't really know who the others are 601: Lack of specialist knowledge 602: Not the most appropriate place 604: social care worker - because of adverse press relating to them being over worked - I would feel they wouldn’t have the time care manager - because of 606: I would have more confidence in the three I have chosen 607: I would want to ensure that social care worker had excellent knowledge and training for the condition. 608: never had any contact with these people would prefer to use recognized health professionals 613: I would be concerned that they would not be sufficiently trained.



615: often not fully trained in relevant areas 618: confidentiality may be breached 620: al Services in this area, and I am so grateful to you for that.

Q14 We are encouraging organisations to work together so people with long-term conditions only need to have one assessment of their needs to gain access to a whole range of care and support services provided by different organisations. Would you be happy for information about you to be shared in this way? (Please tick one option.)

479 (79.3%)

Yes 52 (8.6%) No 73 (12.1%) Don't know / Have no opinion

Q15 People with long-term conditions need high quality care, personalised to meet their individual requirements. This is where the treatment and care received by someone is determined by their individual circumstances rather than a standard approach being offered to everyone regardless of their individual needs. Do you agree with this approach? (Please tick one option.)

586 (96.4%)

Agree 5 (0.8%) Disagree 17 (2.8%) Don't know / Have no opinion

Q16 We are developing our services so we can treat people with long-term conditions sooner, nearer to home and earlier in the course of their condition. Which of the following do you feel we should focus on as priorities? (Please tick no more than two options.)

409 (34.6%) Earlier detection 51 (4.3%) More effective management of medicines 47 (4.0%) Reduction in number of crises experienced (i.e. significant health

deterioration) 147 (12.4%) Improved access to services 135 (11.4%) Prolonging and extending the quality of life 157 (13.3%) Good control to minimise effects of disease and reduce complications 236 (20.0%) Promoting independence, empowering patients and allowing them to

take control of their lives

Q17 Personalised care planning is focused on addressing an individual's full range of needs, recognising there are other issues aside from medical needs that can impact on a person's total health and well-being in managing their long term condition. If you had a long-term condition, would personalised care planning be important to you? (Please tick one option.)

549 (89.7%)

Yes 15 (2.5%) No 48 (7.8%) Don't know

Q18 If you were diagnosed with a long-term condition, what would you most want information about? (Please tick one option.)

278 (45.4%) Information about the condition and its effects



162 (26.5%) What services are available and how to access them 153 (25.0%) The choices available to you 19 (3.1%) Voluntary organisations that could help you

Q19 Keeping fit and healthy can help reduce the risk of long-term conditions and can improve the quality of life for those already diagnosed. If you wanted to make positive changes to your lifestyle, which of the following would you think about doing most? (Please tick no more than two options.)

94 (9.2%) Stopping smoking

221 (21.6%) Losing weight 345 (33.8%) Doing more exercise

61 (6.0%) Reducing alcohol consumption

279 (27.3%) Eating healthier

22 (2.2%) Other

If other, please state: 46 (100.0%) Filter: q19a ok Content: q19a 2: Losing weight, Eating healthier, Doing more exercise. 6: Have answered from perspective of person with a LTC. Am not overweight or a smoker. 37: Have more fun. Options 1-4 don’t apply to me. 48: Consistent mental stimulation. 51: I don't smoke, rarely drink alcohol, I eat healthily and exercise as much as possible I need something else. 80: I do not smoke and drink moderately 83: I do all the above - on weight loss regime 71bs to go. 86: Comply with all only mental activity left 96: I am a non smoker. I drink very little alcohol. My weight is correct for my height. I eat fresh food. I am generally an active person. 104: Reduce Stress 168: Try to develop a calm attitude and look for a more holistic method of managing the illness. 173: I don't smoke, don't drink to excess and weigh 9 stone! 174: Don’t' smoke Eat healthy Not overweight Not heavy drinker Do exercise 189: N 202: A better social life health permitting. 214: Reducing work place stress 226: All are important and the lack of a 'tick' does not infer that such practices should be engaged in. 241: None. I have BMI 20, do not smoke and exercise regularly. I drink little, do not smoke and eat '5 a day' every day - what else can I do! 243: I do not smoke, I do not drink alcohol, and I am vegetarian. 247: I do exercise and try to eat healthily so there are no changes I need to make. 249: None of the above apply to me. I am not on a diet and I fit the same size clothes at age 51 as I did when I was 18. I've never smoked. I don't drink alcohol. I'm not lazy either. 277: NOTE - I do not smoke, am not overweight and only drink alcohol occasionally! 280: This response is from a non-smoker and non-drinker 297: N/A I lead an active lifestyle 302: I don't smoke or drink.



308: I don't smoke, I try to eat healthily, walk the dog each day, drink the minimum of alcohol, and watch my weight. 331: Stress. 368: I have a very varied lifestyle and in broad terms I am happy with it. 369: Already done other four! In this case my 'other' would be to develop any change my medical advisor wanted me to adopt. 416: I don't know what to answer. I don't smoke, I have one glass of sherry a way, I am the correct weight and for exercise I am a volunteer on the North York’s Moors Railway 419: Keeping mobile 441: Would need program tailor made to suit my condition 456: None as these are already incorporated into my lifestyle. 460: Do whatever makes you feel good/happy and hope for the best. 462: Less stressful working environment. 480: No change necessary. 482: I don't drink or smoke, watch my weight and exercise. 509: Alternative therapies - I don't smoke, not over weight, I exercise and eat healthily 520: Hope to keep my friends. 521: Do not drink or smoke, have lost weight so everything else that would help 540: I don't drink or smoke, these would be priorities if I did 553: Internet 564: Making a promise to myself that I will try and keep mentally active, eg crossword. 588: he is agitated, confused, unbal 608: please note I am a non smoker other wise this would have been ticked 621: don’t SMOKE OR DRINK ALCOHOL

Q20 If you wanted to find out more information on making positive changes to your lifestyle, where would you be most likely to go? (Please tick all that apply.)

412 (30.2%) Local GP 150 (11.0%) Leisure Centre 85 (6.2%) Library 82 (6.0%) Health Trainers 128 (9.4%) Other health professional 40 (2.9%) Charitable organisations 165 (12.1%) Department of Health website 147 (10.8%) Local NHS website 60 (4.4%) East Riding of Yorkshire Council website 81 (5.9%) Other website 14 (1.0%) Other If other, please state: 28 (100.0%) Filter: q20a ok Content: q20a 19: I don’t have access to any websites 51: Age and infirmity prevent my participation in these options. 62: Google for information 66: Any local clinics with experience of the illness.



134: Ask friends and family to see what works for them. 144: I think it is common sense. We all know how to be healthier 150: Alternative therapist to distress etc. 152: Books and magazines plus TV programmes 162: Alternative medicine/whole foods etc 189: None of the above 235: Books, pamphlets, leaflets, TV programmes. 241: I don't believe any of the above can improve my lifestyle. 253: Friends and family. 277: Google 284: Do not know who to refer to. 296: I don't feel any of above have time/interest, you have to help yourself first. 321: Use commonsense hopefully. 353: Don't know 368: Newspapers, BBC News and public service broadcasts. 381: Walking group. 436: * not web able. 450: Q19 & 20 are very patronising - most people are well informed 480: As Q19 523: Public information 575: Google. 588: The internet 589: Local Pharmacy 597: Discussions with friends

Q21 Where would you be most likely to go to find out information about long-term conditions? (Please tick all that apply.)

517 (34.5%) Local GP 177 (11.8%) NHS Direct 125 (8.4%) Local nursing team 87 (5.8%) Another health professional 71 (4.7%) Social services 66 (4.4%) Charitable organisations 32 (2.1%) Community groups 86 (5.7%) Patient organisations 101 (6.7%) National help lines 220 (14.7%) National or local websites 15 (1.0%) Other If other, please state: 23 (100.0%) Filter: q21a ok Content: q21a 6: Google Search 44: NHS website 83: Website for condition and select from others options then. 131: Computer websites.



133: Internet 140: Only that I am a carer 24/7, I used to get the full allowance. Since I became a pensioner I receive £29.50, half the amount. Does this mean my patient got 50% better when I reached pension age? I don't think so. 220: Internet 256: Internet 295: Internet. 323: Libraries 353: Friends 368: Google (Internet) 395: I would surf the web 409: Is there a cure? 419: Local vicar, parson 452: Internet general searches 523: Books, internet 559: Web 575: Google. 588: The internet d,' but they do, every time they save someone's life after disease 589: Google 608: internet 620: ng a job, but enjoys their company. My mother had that from Soci

Q22 Are there any other comments that you would like to make about long-term conditions?

77 (100.0%) Filter: q22 ok Content: q22 6: Am a nurse and did LTC placement in training stocks of antibiotics/medications given to patients in case of chest infection etc. Really helped minimise hospital admissions and promote autonomy. Support and point of contact also help self management. 34: No 36: Too many go undiagnosed and those who are identified cannot get the help they need. Everything takes too long and there are far too many hoops to jump through. 42: Grants/benefits that are available are not advised to individuals. 51: Long term conditions do not improve with age and should be monitored regularly to manage age related complications. 54: When a person suffers from dementia they may not be able to make rational unaided decisions. 66: I would like to know about alternative medicines etc against the usual drugs. 82: The feeling of isolation is a main problem 83: Too many options - why not consolidate or publish what the agencies do. 88: I have been a diabetic for 43 years, in the last 8 years the drug manufacturers have changed their insulin’s number of times. Whilst I appreciate that these may be ok for the average person, it certainly has not been good for me. I also feel after various comments to my GPs and the Brocklehurst Clinic in Hull I have not had very good response or support. 98: Patience is severely important. 105: My mother was diagnosed with and suffered from Emphysema for many years - but received good practical support



107: Do not have personal experience therefore some of these questions not easy to answer. 122: I think it is very important to provide support groups 123: No. 134: Seek support and help as soon as needed. 141: I have a long term health condition, I am stopping smoking. My GP's and pharmacist are always ready to help or refer me. 142: People with long term health problems i.e. 1-25 years of an ongoing health problem should get monthly visits from a GP or another person with similar qualifications. 150: People needing care should not have to pay out of the money they have saved! (When people who don't work don't save) There is no incentive to have savings. 151: Appointments with consultants now regularly put back three times after first consultation - therefore those with chronic conditions not getting enough access - NHS is dodging the queue figures 162: Long term illness patient’s best looked after at home if at all possible with family and support. Anything else is second best. 169: We should be given all the help and medicines without prejudice to make our lives as comfortable, long and happy as is humanly possible. 173: We 'pop pills' live longer through there isn't always quality of life. Just have to get on with it. 207: if you can get diagnosis and help. Wee done, for both my parents I got no information, not for trying 208: Giving leaflets to hospital patients (out patients) is not sufficient. One to one consultation is far more likely to put patients mind at rest. 213: Long term conditions needs to include skin complaints such as psoriasis and its treatments 218: Patients with long term conditions need point of contact with for instance nursing professional, frequently this seems to be provided by unqualified carers with lack of knowledge about medical condition. 221: No mention of long term mental disabilities. 225: Long term conditions over very long periods promote depression. More recognition of this would help. 226: A pessimist may say that we haven't the money to treat L/T/C effectively, an optimist may feel the same! 248: No. 249: I believe in quality of life rather than scientifically prolonging life. I a person is slowly dying and suffering and cannot be repaired I don't see the point if medically extending their life for them to keep suffering. 254: Being kept up to date with changes that occur in a particular long-term illness - being told at an appropriate time can save worries. 256: There is a big difference between hospital consultants, some are very good, others average. When you have confidence in a consultant you feel better in your mind. 257: It is rather difficult to think about this as I have no idea what this would involve. 275: Not enough done re dementia. Nurses do not have a lot of knowledge about this. I have had experience of this in two NHS hospitals. 276: N/A 284: I don't know who would be able to help me/who I should ask. 293: It is important to have good backup from GP and nursing team. 294: I do have personal experience and I think everyone is different. I am lucky in having a supportive family, but others may need outside help. 301: No 302: I think prescriptions for asthma sufferers and other long term illness should be free of charge as it is life saving medication. 323: No



324: No 325: Positive thinking - what I can do?, not what I cannot do. 334: Although I'm aware of multiagency approaches, I have personally worked in this environment and when it comes to case conferences found that 12 around a table was general with on two or three people making contributions!!! 335: For some private alternative medicines and professionals should be paid for by NHS or available through NHS where it is shown to greatly improve condition i.e. Osteopaths, Herbalists. 336: Better access to services to keep healthy 353: Production line care at onset then cut off and left to own devises - It can be further down the line when care is really needed. 358: No 368: There is a common lack of confidence in state provided services and there is therefore wariness of services provided by "professionals". I share this to a certain extent with the exception of our own GPs practice (they are good). 395: It would be helpful if one could access the GP when needed rather than be filtered into the system by their receptionists who have no specialist knowledge. 416: There is one condition you have not mentioned - I am a widower, I do have a cleaning lady coming one morning every two weeks. All other aspects of living I cope with myself. I have the support of two great churches but being surrounded by people does not loneliness. I am 76. 418: Assessment and care planning of condition to ensure full knowledge of condition must also include life style changes/support available, financial, equipment and social as well as effect on family. 419: Carers need patience. 432: Tell the truth! 435: At different stages in long-term conditions more help would be required - but independence must be encourages for as long as possible but with the option for more back-up when the condition worsens either for patient or carer. 453: My experience is that different organisations don't have a seamless approach to problems. The sharing of information and application of information, is often absent. 454: It would be nice to have contact with someone who had had the same problems or their relatives who could help you with what is happening. It can be very lonely coping with terminal illness for the person and their relatives. 466: Q18 can not be answered with one tick. 507: People to believe what the person is going through and not make them feel as if all the problems are in your head and that you are putting it on. 519: I would like my GP and professional consultant to have more time explaining what is good for me. 522: Making a GP appointment at some surgeries is almost impossible. For example Newhall Surgery as they have removed their call queuing system to enable them to achieve government targets of treatment within 2 days 533: People who live in rural areas are often isolated and have to travel approx 20 miles to meet other people/groups in common and the travelling can be a problem as these meetings usually take place evenings, or are aimed at older people. 549: Common sense rules 550: N/A 564: To make appropriate adaptations in the house to personalise the package of care. 582: It might be more dignified to let some conditions run their course. 587: No 588: On many occasions it is impossible to plan earlier. One day, you're fine, the next you've had a stroke and unable to talk, think straight, walk etc. Much more help is needed after the event than before.



I am fit and well today, but who knows what tomorrow may bring? The services need to be in place now. 589: Support for carers is vital 594: I don't understand the point of question 20. In my case I could do to lose weight and do more exercise. Other might be alcoholics who should stop drinking, others might smoke and recognise the need to stop. 596: None 610: Yes - I have Parkinson’s and am involved with the local Parkinson's Disease Society. It is scandalous that people with long term conditions under 60 should have to pay for their medication. 612: No 613: Most people would be able to source information about the condition itself. It would be useful to know about services and support groups, both local and national. 620: Giving people the means to empower themselves is a staple requirement for these conditions. Anything that you can do to facilitate this will help people's quality of life, which to my mind is the most important. It's not the length of it that counts, but the joy someone can feel in moments, if moments are all they have to feel joy in! Independent Living Many people in the East Riding need help and support to live independently in their own homes. This help and support can be offered in a variety of ways by different people. We want to improve the quality of life for people needing support to be independent and for those who are offering the support.

Q23 Have you had any experience of needing support to live independently either personally or through a family member or friend?

285 (47.0%) Yes 322 (53.0%) No

Q24 Do you think that adults in your local area are supported to live independently through the following services: (Please tick one option per row.)

Yes No Don't know / Have no opinion

Social services 260 (43.6%) 77 (12.9%) 260 (43.6%) Health services 248 (44.5%) 62 (11.1%) 247 (44.3%)

Q25 Do you feel that older people in your local area are able to get the services and support they need to continue to live at home for as long as they want to? (This could include help or support from public, private or charity services or from family, friends and the wider community.) (Please tick one option.)

238 (39.0%) Yes 136 (22.3%) No 237 (38.8%) Don't know / Have no opinion

We aim to help adults to stay in their own homes rather than provide residential care when

they need help to remain independent.



Q26 If you were unable to live independently without support, where would you prefer that support to be offered? (Please tick no more than two options.)

541 (54.5%) In my own home 77 (7.8%) Move into family member's home 304 (30.6%) In sheltered accommodation 63 (6.4%) In a residential home or care home 4 (0.4%) Don't know / Have no opinion 3 (0.3%) Other If other, please state: 7 (100.0%) Filter: q26a ok Content: q26a 51: Bring more help and services to the door. Do not forget foot care and suitable footwear. 173: Actually that's stupid. Living on a farm may be not able to drive and no bus service would make it impossible. 226: A lot depends upon the commodities, the timing and whether staying at home is appropriate for everyone - why the aim? 272: The best available for me. 419: I think care is better in a small home than a large chain care home. 441: Would depend on what support I required. So all of these if required. 442: Move into family's home - only if they asked.

Q27 Which of the following do you consider to be providing support to help someone live independently? (Please tick all that apply.)

545 (9.6%) Personal care and hygiene 477 (8.4%) Cooking 501 (8.8%) Cleaning 479 (8.4%) Washing and laundry 508 (9.0%) Shopping 354 (6.2%) Taking care of bills 338 (6.0%) DIY or gardening 468 (8.2%) Helping someone get out and about 204 (3.6%) Reading and entertainment 462 (8.1%) Checking on someone 237 (4.2%) Mowing the lawn 371 (6.5%) Giving medication 233 (4.1%) Checking blood pressure 473 (8.3%) Taking to appointments 23 (0.4%) Other If other please state: 34 (100.0%) Filter: q27a ok Content: q27a



35: From what I have seen, provision is very poor, people need more care. 51: Changing electric bulbs. 76: All could qualify as time progresses 96: All of the above 109: Cooking - meals on wheels 125: Socialising 155: Taking time to have a chat and listen to their needs. 176: Help them manage our money, sorry, Government's money - same thing isn't it! 182: All of the above! 195: Daily contact with another person for stimulation and support. 217: Emergency alarm call out equipment 226: My experience of 'other' is that any support is limited, takes time and is grudgingly given. 235: I find the question difficult to understand whether it's about the patient's own actions or services by a second party. 249: It can be any of the above because it depends which things they can do for themselves, and which things they need help with. 264: Support accessing their 'previous life', eg hearing aids/loops/magnifying screens etc. 280: All apply subject to level of disability 296: This would vary depending on level of illness - some may need ALL the above, others only one thing. 316: Recognising when support is required and ensuring that the relevant services are informed so that action can be taken without delay. 320: Wrongly worded? should the word important be included? 369: All these depend on the condition of the person. Not all will be necessary for everyone. 376: It depends on how much help they need. 419: Making sure patient is eating and drinking 421: Obviously dependent on severity of incapacity 442: Any of the above if person too ill. 454: A lot of people are frightened to ask because they can't afford help. 458: Helping in all areas they have difficulty with. 466: The care needed would depend on the individual abilities of the person. 506: All if needed. 533: Doctor and nurse house calls. Chemist’s prescription deliveries. Contact with another person (eg phone call) to help stop isolation and depression. 558: Depends on what they are ABLE to do. 594: Safety from bad neighbours or roaming gangs of youths that can frighten those trying to live independently. 597: Access to social activities, access to e-world (communication with others) 607: Contact with people to avoid loneliness 620: Being with the person, being a reliable presence, even if for very short periods of time. Being real people to the needy, someone who isn't simply doi

Q28 Where would you go to find information about support to live independently? (Please tick all that apply.)

410 (23.0%) Local GP 133 (7.5%) NHS Direct 172 (9.7%) Local nursing team 85 (4.8%) Another health professional



370 (20.8%) Social services 123 (6.9%) Charitable organisations 82 (4.6%) Community groups 115 (6.5%) Patient organisations 108 (6.1%) National helplines 167 (9.4%) National or local websites 14 (0.8%) Other If other, please state: 21 (100.0%) Filter: q28a ok Content: q28a 46: Citizens Advice Bureau 76: Again, all qualify 88: Local Social Services 195: Discussion with close family and friends. 220: Internet 227: Help the Aged etc, Citizens Advice Bureau. 235: Citizens Advice Bureau. 260: Parkinson's Disease Soc. 276: Social Services - ERYC 281: Customer services council offices 284: No idea who I should contact. 417: If there are carers going into a house it is important to try and have the same one (or two) and not keep moving them around. Old people like to see someone they have got to know and trust. 419: Family 450: CAB 533: Local Council. 574: Warden on site. 575: Google. 578: Social Services, Council. 588: The internet only the medical profession had some tho 592: East Riding of Yorkshire Council. 608: internet

Q29 Are there any other comments that you would like to make on independent living?

90 (100.0%) Filter: q29 ok Content: q29 6: Think there is a gap in care provision for people discharged from hospital often relying on more from hospital charity which is not always available. 20: No 27: If people wish to stay at home they should be given the support to do so. 34: No



35: Private companies make no profit by supplying care which in my experience is rather hit and miss. We let the elderly down. 37: I worked for a private care company for some time and have had to employ carers from a private care company. I am convinced that the administration of these PRIVATE companies is extremely poor, and reflects on the care given to clients. 43: Continuity of carers involved important. Need to spend some quality time with patient. 51: A regular visit (once a month) to monitor needs and solve problems if any. 66: The person receiving care, must be able to trust carer and know the help will always be there. 83: Social Services in my experience were more interested in not providing rather than providing to keep costs down. 96: Quality of independent living is most important. Support which enables independent living but at the cost of being 'imprisoned' at home should be avoided. 98: I think it is quite important but in some cases, as in my experience, it is better for them to be somewhere with professionals. 99: If a person can retain her dignity with the help that is given, then I think the services will be doing a good job. 109: I think where possible people would choose to stay in their home. Nobody likes/wants to lose that independence. 123: No. 125: Residential Care is difficult for many mentally active people (who were previously independent) to accept, the answer has to be supported in their own homes. This should be available to all. 134: Provide the right service, without been patronising. 141: If a person can keep clean and be fed this is the minimum but the most important in my view. 151: I have seen the care given to people at home by private companies - it is not enough and not good enough quality i.e. lady put to bed at 5.30, house duty. 162: The support I see people get is not good enough. Workers too stretched - don't have time to really care. 169: It is important that people can live in their own homes with support, they need to keep their familiar surroundings and comfort levels high to make them feel safe and have a sense of belonging. 173: Independent living may be more possible in a town situation. Not so easy in rural areas 7-11 miles from town. 176: Yes, I think it a good idea but we shouldn't have to pay for people who don't come from this country to live and can't be bothered to get a job. Same with underage parents, get them to get a job! 202: Independent living is ok if you are fit and well and able to get out. Older people need someone to take the responsibilities of life. 203: More recruitment required, for more nurses and social workers to cater for ever increasing numbers of elderly people. 207: It's terrible 208: Keeping patients in their own surroundings with which they are familiar surely gives mental stimulation and surely delays memory loss. 211: Everyone I think would like to be independent for as long as possible. 221: We should contribute finance if we own our own home. Some means testing to fund the care according to capital or insurance schemes. 225: The above answers could differ for differing conditions. 226: It's all a dram. Give the person the choice and make 'support' extensive and relevant. No targets. 235: Essential for a feeling of well-being and worth. 241: The current system is very poor regarding medication. East Riding carers will not read labels on boxes and give medication. 247: I think people with dementia should be in full time care homes. Anyone with long or short life threatening illnesses should be given care and support also for the persons who are caring.



249: It can give the person a will to live longer, because it provides a better quality of life by having some freedom and some privacy. Nursing homes are sometimes necessary, but a lot of people in them are miserable due to loss of independence and little privacy. 250: Very difficult to get help when needed, and to find it. 254: Q27 - it is all dependent on the physical or mental capacity of the person living alone. One person might need all of the above, another just an occasional check. 256: My husband has visited many people who have long term illnesses and he always says that yes they are given help with food and personal hygiene but their houses tend to be filthy as they do not get help with house cleaning. 261: I think everyone of us are different and that each need different things to help us live independently. 264: For those involved to remember that 99% of patients are not daft, and that person could be you one day, people and their belongings (whatever their age) should be treated with respect. 275: It is not publicised enough. People feel bogged down with red tape. Too jorgonistic. 276: N/A 281: Re Q27, Whilst all listed would be beneficial, a personal plan for each individual would require different items of need. 282: Re Q24 & Q25, my reasons for answering "no" are that a lot of services need paying for eg meals on wheels etc. Elderly people should receive free support providing they have contributed via NI Contributions in the past, as a proportion. 284: It seems to be a minefield of agencies. 296: Hospitals demand too higher level of aftercare requirement to "cover" themselves when discharging a patient. Therefore too many people go into care homes as family and Social Services cannot provide the stated care levels. This has happened several times in our family. 301: No 304: Always having a person at the local Council office, to point people with problems and requests in the right direction for help. 313: Help is often needed in advice not necessarily financial - it is my experience that Social Services are not interested at all if you are over their financial criteria. Experience of paid PTE care poor. 323: No. 331: It can be difficult to access help. 334: People are scared stiff regarding the cost implications of care homes and worry about how their partner/husband/wife will cope if residential care is needed. 344: Not everyone has access to computers to source information. 348: A main problem appears to be getting the person to admit (1) they need help (2) pride (3) not wishing outsiders to see and be involved in their problems 350: I do believe more money needs to be put into the system to help the elderly. 351: Independent living services usually involve finance, in some cases this may be a problem. 355: Consistency of the Group of people involved as familiarity is as important as any of the responses in Q27. 358: No 369: I am all in favour of independent living as long as all services are reliable and people are not left without vital care when they need it. I also think that some conditions will eventually need residential care for safety reasons. 372: Less fuss more money 408: As long as possible 412: To have 24 hour contact by telephone or 'Lifeline' system free service 416: My thoughts are that for a person living alone, all the memories of their wife/husband are in that house. It is important they are not torn away from that. 421: Make family aware of patient's requirements



435: Regular checks are important for the person, not being "cut off" but in a friendly way. These must be at least once or twice weekly. 442: I have several health problems (apart from broken arm) - all long term. But I will always take any help offered to stay in my own home. 450: It should not be the holy grail of care often sheltered accommodation and care homes are the best option. 453: Only the obvious. Independent living should be in place for all elderly people and looking after their minds as much as their bodies is vital. 469: It depends on the degree of help needed. I am 85 and can manage with cleaning help in the house and gardening and at present don't need assistance on the list - question 27. 487: In order to continue to live independently, that person needs the confidence to know that any support is administered by carers/nurses who are well informed about the needs of that person, especially for elderly people - consistency of care. 507: I would like to see when patients reach the age of 55 you are not past your sell by date as some GPs think you are. This I know to be very true. 512: It's important for most people to have their own independence. The elderly don't like putting people out 518: I only have a bath but would like a shower 519: I would prefer to live independently but if unable to do so would prefer sheltered accommodation. 520: Answer to Q24 and 25 we have too many claims on the NHS to get the services we would like when we are old its impossible. I am 84 years old I don't expect it. 531: I feel it is very difficult for the elderly in particular to go about getting any help as the paperwork is not easy to understand and certainly my father in law was unable to do it himself. 533: Only made aware they were available after joint replacement and long stay in hospital. There is funding for this in benefits if you meet the criteria. But you need to know in advance as it takes time for it to go through and then you have to find someone to do it as you have to wait for a place if all the slots are full. 541: One of the biggest factors would be what support you have from your family 542: Support is often hard to find. The elderly especially are often alone and vulnerable. 564: I think when you are old enough to be out of the schooling system, you should be sent information on how to live independently. 587: I think people should stay in their home as long as they are in reasonably good health and able to care for themselves but should be taken into care if they find they can't. 588: In an ideal world, every person wishing to be independent would be. But those suffering from dementia are often unable to make that decision. Some need care. Items listed in Q28 go nowhere near being able to provide independent living. In my case, for example, who would help me control the computer, read to me, do any number of things I do now? More places should be available in a caring situation by third party experts. I wouldn't want to be a drain on my family either. 594: No 596: care seems to vary from place to place. In my experience help was inadequate and little was gained from medical or social services. This is wrong , people should be helped in their own home if they are to have the best quality of life. 604: only that it is vitally important in the well being of an individual - to take away their independence can take away a persons dignity, and this can cause their mental well being to suffer, having a knock on effect of taking away a spark to live 609: No 612: No 613: The kind of support needed is different for every patient. What is important to one person may not matter to another.



620: Only that it's a human need, as it fosters self-respect, which helps with health as well as the quality of life. It's all interrelated. 621: I believe that if someone has capacity to say that they wish to remain living in their own home, that they can be supported to this if funds are available and enough support can be given by the appropriate professional. Carers Carers are people who offer help and support to people with varying different needs. We want to make sure that we are providing carers with the appropriate services in order to continue offering this care. If you provide any of the services mentioned in Question 27 to an adult on a regular basis

you could be classed as a carer.

Q30 Have you personally had, or do you know a friend or family member who has, any experience of caring for others?

199 (32.9%)

Yes, personally

233 (38.6%)

Yes, friend or family member

172 (28.5%)

No

Q31 Which of the following do you feel best describes the role of a carer? (Please tick one option.)

417 (69.3%)

People looking after or giving help or support to family members, friends, neighbours or others because of long-term physical or mental ill health, or disability or problems related to old age

77 (12.8%) People paid to provide help and support to people in their own homes 49 (8.1%) People who provide help and support to their family members who live

with them 29 (4.8%) People who look after family members who do not live with them 30 (5.0%) People who are paid to look after people who are struggling to cope due to

old age

Q32 If you were faced with the responsibility of caring for someone, what would worry you the most? (Please tick no more than three options.)

271 (18.8%) Financial worries

235 (16.3%) Health problems

125 (8.7%) Accommodation problems

452 (31.4%) Emotional strains

19 (1.3%) Childcare issues

132 (9.2%) Issues with work or training

205 (14.2%) Lack of free time



Q33 People who care for others are often affected by ill health because of the extra responsibilities they take on. How do you think local public services can best support carers? (Please tick no more than two options.)

148 (12.4%) Offering good advice 81 (6.8%) Offering financial advice 125 (10.5%) Offering emotional support 378 (31.7%) Offering breaks / respite 164 (13.7%) GPs and other professionals being informed and able to signpost for

support 54 (4.5%) Annual health checks for carers 56 (4.7%) Providing cover for things such as hospital appointments 188 (15.7%) Support to stay physically and mentally well

Q34 We think that there are more people in the East Riding with caring responsibilities than we are aware of, and we would like to encourage people to identify themselves as carers so that we can provide enough services to meet their needs.If you were an unidentified carer what would encourage you to come forward and identify yourself as a carer? (Please tick one option.)

259 (43.7%) Promotion of available support

107 (18.0%) Increased awareness of the role of a carer

78 (13.2%) Reassurance from services 13 (2.2%) Other 136 (22.9%) Increased awareness that

decisions will be made with people not for them

If other, please state: 21 (100.0%) Filter: q34a ok Content: q34a 2: Reassurance from services, Increased awareness that decisions will be made with people not for them, Increased awareness of the role of a carer. 74: N/a 88: Contact with GPs and local communities to identify carers 152: Being made to feel comfortable no matter what it is you are saying 167: Financial support 215: Too old. 226: Q31 - A carer is the person left to cope after all others, individuals or organisations have turned away. 241: I believe that people do not understand that they are carers. It needs explaining what you need to be doing to be classed as a carer and then advertising the available help/support. 249: I wouldn't come forward for help and support unless I thought I was well and truly stuck where I couldn't go on, on my own; or unless I thought someone else needed help that I couldn't give or that they needed more help than just me alone. 257: I have no idea. 353: Financial incentives 429: Discretion



449: N/A 450: The assurance of practical support 527: Financial help i.e. Tax perks, benefits etc 566: The fact that I could no longer cope without external support. 587: I was a carer looking after my sister for quite a few years 588: to pass away peacefully. Much better than our daily visit to a loved one in a home where 589: Friendly ear to talk to when things get tough preferably of the same sex 604: additional financial aid 612: A feeling of appreciation from all agencies. Practical help in caring not just reassurance. Money!

Q35 If you wanted to find out more information about the role of a carer where would you be most likely to look? (Please tick one option.)

130 (21.3%) Local GP 9 (1.5%) Community groups 34 (5.6%) NHS Direct 20 (3.3%) Patient organisations 54 (8.9%) Local nursing team 18 (3.0%) National helplines 14 (2.3%) Another health professional 89 (14.6%) National or local websites 218 (35.8%) Social services 6 (1.0%) Other 17 (2.8%) Charitable organisations If other, please state: 12 (100.0%) Filter: q35a ok Content: q35a 2: NHS Direct 76: Impossible to be only one all should or could be used. 124: GP as first port of call and then others as directed 177: Google 253: Not sure as there are many options on this part. 313: The Community Nursing Team were a shining example of help for six weeks after a relative came out of hospital after a prolonged stay. 435: Surely you know whether you are a carer or not this role is taken on with anyone who is faced with either family or partners who require your assistance or help. 449: N/A 549: social services are really very helpful 575: Google. 578: Aware of role of carer. 588: The internet ught and co

Q36 If you wanted advice on the support services available for carers where would you be most likely to go? (Please tick one option.)

73 (12.1%) Department of Health website

32 (5.3%) Charitable organisation

59 (9.8%) NHS website 54 (9.0%) Citizen's Advice Bureau 88 (14.6%) East Riding of Yorkshire

Council website 78 (13.0%) Local council offices

14 (2.3%) NHS Direct 19 (3.2%) Other



184 (30.6%) Local GP If other, please state: 25 (100.0%) Filter: q36a ok Content: q36a 50: Google search 66: The doctors and nurses who attend the patient. 87: Internet search engine 88: Social Services (this comment from personal experience) 91: Local Health Centre and all of the above if required 98: Internet. 100: Social services 207: Local websites 264: If I was a carer I would expect to be automatically offered/informed about available support. Not have to be looking for it. 277: Local nursing (community) team 334: Social Services 385: Google 428: Social services 449: N/A 457: Social Services 466: National websites. 522: Customer service centre/library 549: Social services 550: Social Services 567: Carers Advice Service 574: Family. 575: Google. 588: The internet 604: general internet search, which may direct me to the websites above 612: Social Services

Q37 Are there any other comments that you would like to make on carers?

62 (100.0%)Filter: q37 ok Content: q37 34: No 36: My experience of 'home' carers is that they 'pop in' for an hour, do the easy jobs and leave. It's a shame because the good ones work very hard under difficult conditions. 37: I think it is VITAL to discriminate between people who care for a relative and those who are employed by Social Services or private companies. Both groups are called CARERS. 53: I don’t think the forms to apply for carers allowance helps , it's too long and in language not really easy to understand. 66: Having been a carer for my father and other people I found it very hard to find out about entitlements eg allowances or respite care, I had to seek this. Was not informed. 74: I have a personal carer daily



83: Why are social services not included. 96: Time is the biggest commitment a carer can give. A carer needs almost as much support as the patient. 104: Under paid emotionally drained. 123: No. 125: For thirteen years, I was a carer, unaware of that fact and when it was pointed out, reluctant to accept it. No one from the medical profession raised the issue and it was only explained by a charity. No support was offered before. 134: Wouldn't mind been a carer - but not sure how to go about it. As I'm used to working in retail. 140: I have been a carer for many many years. My view is that if you are coping and not moaning constantly, you are left to your own devices. 151: Carers are underpaid, unsupported and neglected. Their voice is not heard. The ERYC carers are not effective. Carers need rights and respect 172: I feel that carers in the home should still be able to maintain their independence i.e. if they have a part time job elsewhere. It would be good to know what cover was available. 201: The majority of time family members do not class themselves as carers and a wider guideline would be helpful. 202: Carers need as much human support as possible and shouldn't be looked on as part-time nurses. 207: Too many are not offered support and they just have to get on with it, in silence 215: No 217: Unsure how individual needs are attended and who determines a care programme 218: Family members who are carers need more support. Nurse/social services do not have time to provide emotional support to carers 226: Without carers, the NHS and L/A could not offer a fraction of the support the carers give. They are generally treated poorly and get little or no support. 239: Carers and the 'cared for' like to work from home. A residential setting needs to be the last option for most. 247: I don't think there is enough support for carers and they don't always know where to go. 249: I haven't done any research on carers. I suppose if I had a health query the easiest first place enquire is our GP surgery. If I had a general query, Citizens Advice Bureau. They can tell you how to get further information. 253: Not sure. Have not had to contact anyone over caring issues for many years. 254: The carer needs to know someone cares for them - support groups help enormously but one has to have 'relief' care in order to be able to attend any sessions arranged. 256: People are sympathetic with whoever are ill but don't realise what problems carers have, eg physical and mental problems and financial problems. 275: There are many companies who do not provide the service they are paid for. 276: N/A 289: Funding for carers, particularly who look after (long-term) a family member should receive more financial support and the funding should be simpler to obtain and be seen to be fair by the public. 313: Paid carers i.e. professionals not relatives, should be better organised and paid to provide a consistent service i.e. visits on time and by the same small team so the person I known to the "patient" NOT our exp of care company provided through Social Services. See Q35 above re Nursing Team. 324: No 325: Lots of promises but not always a delivery. 334: Respite for carers on a regular basis can help to sustain the carer and prevent emotional and/or physical breakdown. 348: People who have not experienced being a carer have little idea how difficult this role can be (however willing the carer is). There are such problems juggling being a carer, family life, working life, personal well being, feeling of guilt etc. However people keep on doing their best.



358: No 369: Carers deserve all the support that can be offered including any cash incentives to help. 395: Many people, like myself, do not consider themselves in the role of carer. I was just a daughter looking after my mother as she had looked after me. 406: Yes they should get more financial help. 418: People may be more ready to become carers if there was a package put together to provide support in all areas required - information given freely - not having to search for hours to find what entitled to. 435: Carers are the backbone of the "unpaid" health authority these people give up their social life, family life and often their own wellbeing to provide the "needs" for someone in a desperate state. "Carer" is not just a word and needs more support. 445: Financial Assistance required pro rata to condition of individual 450: Please see Q34 carers need practical support 487: Caring for a child, adult or elderly person is often a thankless task that has to be done, often by an immediate family member. Some carers have an extended family to share the burden but many carers are on their own, coping. Perhaps some priority for relief from caring duties could be considered for sole carers, regardless of the age of the carer. 507: Yes they are the most underpaid and taken for granted. They are left behind with everything. They don’t get breaks or holidays and they don’t get financial help to replace things that the patient breaks. They are always penniless. 512: Carers often don't speak out as being a carer as they believe it's only right to take care of a loved one. 513: There are a silent band of heroes. 519: They should have a maximum age of 65. 534: One has to carry out many difficult problems. 549: As a carers the public think we are led by, money and ignore our role. It is the public who should be educated. 557: Re Question 31: I think ALL CAN apply because of different needs often people being cared for. 573: Many of my answers are based on the use of a computer but in fact quite a lot of people do not have access to one, therefore other types of information are needed. 576: As a carer myself I did not get any support until my aunt was registered blind, before then I had to find a social worker to look at my needs as well as hers. 586: Very important that someone should be in contact with carers weekly 587: I cared for my mother for quite a few years. The last 2 years of her life were the most exhaustive years for me. It took quite a long time to get back to some normality in my life and of course the loss of a good mother. 588: There will never ever be enough carers for those in need. 594: No 596: None 606: I don't believe carers are supported as well as they could be and there seems to be far to much paper work to complete when asking for help 609: No 612: As a carer myself for two old ladies(one now deceased)over the last 30(sic) years the constant time pressures are enormous in addition to the costs. Carers are a free asset of the state and save the state a fortune. This should be recognised. Speak Up!



We would like to find out how you feel about being a member of the new Speak Up! panel.

Q38 Thinking about being a member of Speak Up!, please tell us whether you agree or disagree with each of the following statements? (Please tick one option per row.)

Strongly agree

Agree Disagree Strongly disagree

Don't know

The council is interested in my views

64 (10.9%)

370 (63.1%)

60 (10.2%)

9 (1.5%) 83 (14.2%)

The NHS is interested in my views

42 (7.3%) 321 (56.0%)

90 (15.7%)

16 (2.8%) 104 (18.2%)

I think that the council is listening to my views

25 (4.3%) 264 (45.9%)

90 (15.7%)

15 (2.6%) 181 (31.5%)

I think that the NHS is listening to my views

21 (3.7%) 221 (38.4%)

115 (20.0%)

19 (3.3%) 199 (34.6%)

I know about council services within the East Riding

18 (3.2%) 231 (40.5%)

177 (31.0%)

29 (5.1%) 116 (20.3%)

I know about NHS services within the East Riding

17 (3.0%) 214 (37.8%)

188 (33.2%)

27 (4.8%) 120 (21.2%)

I can make a contribution to the way services are provided in the East Riding

31 (5.5%) 253 (44.9%)

85 (15.1%)

9 (1.6%) 185 (32.9%)

I can help improve my local area

42 (7.4%) 260 (45.9%)

63 (11.1%)

7 (1.2%) 195 (34.4%)

I can influence local decision making

25 (4.4%) 185 (32.8%)

105 (18.6%)

32 (5.7%) 217 (38.5%)

Q39 We want to shape services around the diverse needs of our population. In relation to the topics covered in this survey, are there any issues you think we need to consider in relation to diverse needs (for example, race, gender, disability, age, sexual orientation and religion & belief)?

122 (21.7%) Yes 439 (78.3%) No If yes, please explain your answer below: 131 (100.0%) Filter: q39a ok Content: q39a 8: All of the above should always be considered. 37: All of the above need to be taken into consideration at the initial assessment. 40: More sheltered accommodation 43: Age/disability - poor physiotherapy support for old people with dementia. 46: An individual care plan should take these matters into consideration. 47: All of the above need to be taken into consideration. 48: I am a student in full time education. 54: Age is a problem for older, independent individuals who are set in their ways and often neglected in remote area of the East Riding. 60: Disabled and old people need more support. 73: Disability affects everyone, all venues should be accessible.



77: If you are ill you are ill, does not matter what race you are. 83: People should be treated the same - fit in or don't ask for help. 88: Spend more time actually speaking to people instead of sending surveys like this for statistical data, i.e. actually do something instead of wasting time and money producing statistics. 96: Assess people by their need, not by their group. People are individuals and health issues are personal. Everyone is equal when considering quality of life. 105: A cross-section of people with different social/financial status 106: If you are going to provide individual care plans for people then these issues need to be taken into account 107: None of the above should have any impact on services provided. 108: I have been disabled all my life (over 60 years) and never been offered any help in that time - and I never receive replies after filling in questionnaires. 109: Carers of the disabled/help for the disabled. 111: No one group should be singled out for special attention within the population 114: People should not be made to feel they are pushed to the back of the queue. 124: Being PC is a great waste of time and money, lets just get on with things. 126: Everyone should be treated as equal. 127: more interaction/communication between various services 136: Each of the examples will have a different emphasis for each individual, hence the need for a personal, tailored approach to each individual situation. For example, a man may be uncomfortable dealing with female support and vice versa. 137: We must remember that everyone is an individual and respect and listen to their views and be able to act upon them. 140: There are many things needed but nothing gets done. 141: People who do not understand or are vulnerable (i.e. mentally impaired) should be identified and given a full assessment of needs. 143: Young disabled adults 146: We are all different with different needs and do not want standardising. 147: Not to let diversity issues become bogged down through political correctness. 149: Many issues like these are not regarded as being important for older people simply because they are older. So Age is a consideration. 150: Forms that have to be filled in by elderly carers to access money. They have enough trouble coping with care. Could be filled in by Doctor/Nurse or health care visitor visiting. 168: People should be treated as individuals and issues of race, gender, age, sexual orientation, religion and belief should not be considered as having an influence on their need. 171: I hope our views are going to be used. All too often in my experience, views are overlooked due to budget constraints. 173: Someone has to think RURAL. Government not so good at this or caring. 175: All of the above may need consideration in certain situations. 176: Because I feel all my money goes to everyone else but myself. All I need to do is have a baby and I get a home and loads of money! 177: Ageing population 179: Race, minority group. Language barrier. 184: Sorry for not answering this last question, I don't know the answers. 188: In a mixed population all diverse needs arise and must be taken into account and consideration must be given to these differences. 196: Strain on services caused by immigration and financial restraints. 202: In my opinion older people would be better in sheltered accommodation without the worry of repairs etc to their own homes. 203: As per Q29



208: I think that religious belief plays a great part in the Heads of the elderly and visits from their respective religious groups should be encouraged. 217: There needs to be a system where individual needs are assessed and care plans implemented to suit these needs. A simple system of comparing needs to a comprehensive list of available services would meet this requirement and provide individual and carer with structured plan for their future lifestyle. 218: Age and disability only long term disabilities can often cloud judgements of health professionals 221: All of the above. 224: Drug and alcohol abuse 226: If you need help/advice support it matters not if you are the above groups. In a caring and integrated society care should be available and free to all. 233: You need to treat everyone the same, according to their needs. 235: Some people have many close family members and friends and may not require so much help. People who are alone and friendless and poor (monetarily) require so much more help. Individual homes for these people need to be modified - showers, no stairs or stair lifts, special chairs etc. therefore means-testing is important, though richer people's needs must not be ignored. 238: Service providers must keep in mind that old people are people first and old second. 244: Religious belief sometimes determines the amount of medical intervention people will accept. Older people and people with dementia are often treated with lack of respect. 246: Alcoholism doesn't have a strong enough lobby nor is it sufficiently researched! 249: I would think information gathering is useful and if anyone knows someone needing help if they ask them and make enquiries as to what is available on their behalf and maybe more advertising for people as volunteers to help and get to know people more in their local community. I know some church goers where if someone elderly isn’t at the Sunday service they call round to see if they are ill, unless they've said they are going elsewhere on that day. This is a good safety net for people living alone but obviously there are people in the community who may need help and they are not known to anybody in particular where people will realise to help them if they need help. 254: Race: sometimes there is need for female help only. Disabilities - need for real knowledge of the best way to help. 261: Child care - schools 266: As some children have to care for disabled parents it is very important that they should be given as much help as possible including sometime off to do "their own thing". 270: Just keep Bridlington hospital open on every level, which will never happen 272: Too much consideration given to ethnic minorities. 279: Please remember we live in a very 'rural' area. 280: Good communication skills vital. Empathetic response to the cared for person. 281: Information given in other languages. 282: Get the balance right re native British people and immigrants i.e. a lot of British Nationals think that immigrants get a 'preferred' service. 298: Disability and old age. 303: Location. Need more support in rural areas not just transport to get people in to the cities for treatment then longer in hospital because of lack of support in rural areas. 308: I think I need to know more about these services before I can answer this. 309: Disability. 323: Gender, disability and age. 324: Marketing of Services, need to address diversity of the population. Not obvious at the moment. 325: Treat the individual 331: Rural areas must be covered as good as towns.



334: Age is the BIG issue. Aging population needs to be addressed now. With the closure of small hospitals imminent, i.e. Hornsea, Driffield, will there be enough bed space in the East Riding? The new planned hospital for Beverley will not be enough. 336: The inability of elderly people being to reach all services. 346: When seeing GP etc people should be given choices of seeing males or females or speaking to someone near their age 348: If the emphasis is on individual needs them all of the above are essential components of that individual and will influence their needs to continue their own life. 357: Everyone is an individual so race, gender etc has to be taken into account. 359: More needs to be done for the disabled living in accommodation that does not meet these needs. 367: Consider disability, age and finances and able to work on well days. 369: Suitability of person delivering care to patient eg someone very modest might object to personal care undertaken by member of opposite sex etc. Match carer to patient carefully. 372: With regard to religion and belief I think that diet is a consideration. 381: Age 384: Organisations and carers need to be aware of people's spiritual needs which have a large bearing on physical and mental health. 395: I think that "professional" carers should be caring people and look after their clients and not do anything to upset someone who could be in a fragile, emotional state. 402: Rural/urban divide 406: Living accommodation. In some places it is not very good to put young and old together. 408: People of old age to be checked on a regular basis in their home surroundings 412: Care is not only aimed at the elderly and can be young to old or old to young 416: Just to be sensitive to people's individual needs. 418: Cultural requirements within families will vary in our ever increasing number of different nationalities arriving in our area. 419: Gender to Gender 421: GPs 'working office hours' is crazy 424: Q39 - No - unless - If I am wrong, holding my current belief in 2009 that all diversities of our multi-cultural society are addressed, adhered to and, are given equal support - then councils and the NHS are failing our people. 431: Services should be flexible to individual needs. 435: The services offered are only as good as the people you choose too implement them - more care in the choice of candidate must be paramount. 436: Websites are not useable by many citizens. 438: Certain aspects of care can be done in a generalised way but some must be done in a more individual way. Take into consideration personal and individual needs. 442: I think a lot of older people, particularly living alone don't know how to ask for help. 450: You need to actually take notice of a community that does not what its local hospital closed/downgraded or its meeting place moved. Instead of instituting placatory methods to keep us quiet and carry on doing exactly what you want. 453: Gender and domestic violence. 454: I think that doctors need to check on elderly people they haven't seen for years, not necessarily themselves but their nurses. People on their own and mentally ill don't know they are not well. If they have no relatives or their relatives live away, they can be ill for months before anyone knows. 460: Hopefully this survey includes all the above examples and is available in different languages and formats eg for deaf and blind people and possibly learning difficulties. 466: The Council actually needs to listen and take notice then act not do what it does best. Listen and do what it thinks is needed.



472: I think it should be made easier for people to get help as carers, it is made very hard to get help from official bodies while the patient is alive. 478: Lack of frequent public transport. Lack of actual provision (outside Beverley). 479: Everyone should be treated and listened to equally especially disability - gender - sexual orientation. 487: My GP knows that I have been the sole carer of my disabled husband for the past 15.5 years. At no time has any respite care been offered to him or me. When a family member is plunged into long-term illness and is cared for by another family member, the needs of the carer should be taken into account and they should be given full access support and respite in order to continue that important, obligatory carers' role. Although there are systems out in the community to help carers, the information has to be ferreted out; none has been offered to me as part of the carers' rights to maintain their own health and fitness, both physically and mentally, in order to sustain this necessary caring role. 505: I think you could ask more clearly what the persons long term disabilities are eg stroke 507: Get GPs to listen instead of putting you on the side line. Not just GPs but any medical person because no one does. 509: The reluctance of some elderly or ready to ask or accept help 512: Sexual orientation simply because it is becoming more of an issue in schools, work places and news. 513: None of the above should have any bearing on the services you offer. 515: As people become older and in many cases ill their greatest worry is maybe having to sell their home to pay for residential care 517: Law and order on the streets 519: Disability and religion relief. 521: Age - disability 522: The Council and NHS and Government are only interested in being politically correct. All the above should be irrelevant to the needs to people needing care and support 533: In general people assume if you’re young or look well that you don't have a disability. 540: I think all the things listed have to be taken into consideration when dealing with people in order to treat them with respect 581: Disability 586: All the above 587: Race is difficult and disability 588: Race, gender, age, sexual orientation, religion and belief are secondary to the provision of excellent health care. These five factors have no bearing on that provision. 589: Men find caring very difficult yet are the least likely to ask for help but when they do they REALLY need it, this from personal experience but also as a pharmacist 591: Immigration - legal and illegal Youth work and special needs in the rural community Low cost housing in rural areas Importance of shops, post offices and pubs in rural areas. Should there be special planning restrictions before any of the above are converted to homes and the village loses its facility. 594: The issues covered in this survey effect everyone and should not be swayed by race, gender, disability, age, sexual orientation and religious belief. 597: All the above 604: as well as the needs listed above which are the "tick box" needs, I believe that Transport can be a major problem. if a person is unable to drive, it can be difficult to access places - eg hospital. where I live there is a very limited bus service, and if I wanted to get to castle hill hospital it would be an all day event - If I were unwell, this could be too much for me and would leave me exhausted. Taxis are not always financially viable - that hospital would be around 15 miles from home and would cost the earth there and back. 611: A younger generation with little to do to occupy themselves in their free time may be they could be utilized to assist an older generation living longer. (Paid or unpaid?).



Thank you for taking part in the first Speak Up! Questionnaire. We will provide feedback on your responses in the Speak Up! Newsletter which will be produced early next year.

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