you, me, memory and dementia
TRANSCRIPT
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You, me, memory and dementia Let’s Make a Difference
28th Sept 2018, 10am-4pm. Venue: The Oculus, Aylesbury
Conference Report Contents Executive Summary 2 1. Introduction 4 2. Conference programme outline 5 3. Afternoon session: Your views of dementia services A Summary 6
4. Question & Answer Session 11 5. Answers to questions that were not answered on the day 14 6. What’s next 19 7. Summary of attendees written evaluations 20 Appendix 1: Afternoon session: Your views of dementia services – The complete record 25 This report was compiled by: Mike Roarty Conference Facilitator Director
www.coach-ppp.co.uk Mob: 079 58 31 83 09
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Executive Summary
NHS Buckinghamshire Clinical Commissioning Group worked in partnership with Memory Support Service [Alzheimer’s Society], Carers Bucks and Buckinghamshire County Council to deliver “You, me, memory and dementia - let’s make a difference” conference on the 28th September 2018. The conference was also supported by Buckinghamshire NHS Health Care Trust, Oxford Health NHS Foundation Trust and third sector organisations.
The purpose of the conference can broadly be seen as:
Enable delegates to hear about other people’s experience of dementia and to share their experience.
Enable delegates during lunch to find out about services available in Buckinghamshire.
To understand what delegates feel is working well and what isn’t working well.
What are the gaps and what would good look like.
Approximately 160 people attended the conference including, people with dementia, memory concerns, carers, supporting staff, volunteers and senior professionals from statutory organisations.
Guest speaker Wendy Mitchell delivered an inspirational account of her experience in adapting to life with dementia. A panel of four service users then presented to the conference their experiences with memory concerns, dementia and the careering role.
The carers choir and a moving poem written by a carer about careering for her husband opened the afternoon session. Delegates were asked to give their thoughts to four questions during the afternoon. The questions and emerging themes can briefly be seen below.
What works well for you in your situation and the help you receive? Getting a diagnosis, support from GP, continuing to do what I enjoy, keeping connected – family, friends and peer support. What’s not working so well? Having to tell your story over and over again, difficulty getting a GP appointment, services not co-ordinated, lack of information and no follow up appointments. In your situation and the help you receive what has been missing for you? Respite for carers, a list of services available, follow up appointments and GP’s to see carers by themselves.
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One thing that would be part of really good support in the future for me is… Single point of contact, increased funding, access to support 24/7 and co-ordinated services. Responses were divided into two groups, people with memory concerns or dementia and carers. Lively discussions took place during the afternoon and the full responses to the questions can be seen at Appendix 1
Following the workshops a panel of experts across the statutory organisations were asked a number of questions provided by delegates anomalously during the day. The questions and responses can be seen on page 11
Due to the high number of questions submitted for the panel a commitment was made by Carers Bucks and Memory Support Service to seek answers to the remaining questions that weren’t asked due to time constraints and publish them in the final report. These questions and responses can be found on page 14
So what’s next……. An action plan will be developed, published and monitored through the Dementia Partnership Board as well as the Dementia Delivery Board. A progress report will be developed and published in 12 months. Further consultation events will then be held to provide an update on actions taken and explore if people are seeing a positive impact as a result of changes being made.
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1. Introduction
This conference report records key information communicated and shared at the ‘You, me, memory and dementia’ conference on the 28th September 2018 at the Oculus in Aylesbury, Bucks. The programme outline of the day is shown on the next page.
The conference was attended by around 160 people:
22 people living with a diagnosis of Alzheimer’s or Dementia 4 people living with a diagnosis of memory impairment 61 carers or family members 30 table conversations facilitators 12 helping staff and volunteers 28 stall holders providing information about services and support available 8 senior professionals (some of whom were on question and answer panel) The key organisers of the conference were:
Maxine Foster, Older Adults Mental Health & Dementia Commissioning Manager - NHS Buckinghamshire Clinical Commissioning Group Ann Whiteley, Adult Carers Services Manager- Carers Bucks Nicole Palmer, Services Manager - Buckinghamshire & Milton Keynes Alzheimer’s Society However a great many other staff from the organisations mentioned above, as well as volunteers and service users also played a huge part in bringing it all together. Thanks to all concerned.
Morning Presenters
More specifically we would like to thank Wendy Mitchell for giving us an inspiring and touching account of her experience in adapting to life with dementia. After 20 years working in the NHS as a non-clinical manager, Wendy was diagnosed with dementia in 2014. Her book about her experience “Somebody I used to know’ is a Sunday Times best seller. Our thanks and appreciation also go to the four service users who presented to the conference on their experiences of living with dementia and memory impairment, of their experience of the caring role, and specifically of being a young carer. These were Paul Unwin, Stephen Smith, Sue Wilson and Taisha Egan. Stephen Smith also opened and closed the conference. Thank you Stephen. We also want to thank the Carers’ Choir who inspired and entertained the audience after lunch, and Heather Hobson who read her poem about her experience as a carer of her husband.
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2. Conference programme outline:
Time Content
10.00 – 10.20 Registration and Refreshments
10.20 – 10.40 Introduction to the day
The Aim of today and what will happen afterwards
Our agenda
What I want from this
How we can work best together today
10.40 – 11.30 Wendy Mitchell – ‘Adapting to life with Dementia’
Presentation from Wendy about her experience of living with Dementia (30 mins)
‘In listening to Wendy what was important for me?’
Questions for Wendy
11.30 – 11.50 BREAK
Poem by Heather Hobson
11.50 – 12.20 Our experiences in Buckinghamshire – 4 stories
Young Carer - Taisha Egan
Person living with dementia - Paul Unwin
Carer – Sue Wilson
Person living with memory impairment - Stephen Smith
‘In listening to these 4 stories what was important for me?’
12.20 - 13.10 LUNCH
13.10 - 13.20 The Carers Choir
13.20 – 15.05 Your views of dementia services Your opportunity to answer the following questions:
1. What works well? 2. What’s not working so well? 3. Where are the gaps? What’s missing? 4. What would an effective dementia service look like in the
future?
15.05 -15.25 BREAK
15.25 –15.55
Your important questions Your opportunity to put as many of your questions as possible in the time available to senior representatives from the NHS in Bucks, Bucks County Council and others.
Questions that were not answered will be answered afterwards and publicised
15.55 – 16.00 Review of the day
What has been most useful?
Evaluation
Close
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3. Afternoon session: Your views of dementia services – A summary
The first part of the afternoon gave everyone an opportunity to answer the following questions:
1. What works well for you in your situation and the help you receive? 2. What’s not working so well? 3. In your situation and the help you receive what has been missing for
you? 4. What would part of really good support in the future for you?
With the understanding that they might have different answers to these questions we invited people living with the conditions to sit together, and carers and family members to sit together. Of course if people did not want to do this that was fine. This enabled us to show below what the answers are from the two perspectives. Table facilitators asked people the questions and recorded their answers. The following answers are a summary of the answers that appeared most often. For those wanting to look in more detail at a less summarised version these are shown in Appendix 1, page 25. ___________________________________________________________________
Question 1: “In my situation and the help we receive what works well for me is…..” The answers from people living with a diagnosis of dementia or memory impairment:
Getting a diagnosis.
NHS- Notably general practice.
Alzheimer’s Society, DIS and follow-on GP.
Being connected with other people and things.
Meeting people that I know I feel comfortable with.
Organised group meetings (e.g. today’s event).
Keeping occupied, i.e. going out/activities/hobbies with others.
Support of my husband/ spouse.
Helpful neighbours.
The answers from carers and family members:
Support from GP surgery.
Having power of attorney.
Support from family and friends.
Finding Carers Bucks.
Being able to continue with my hobbies.
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Being connected with other people and things. Keeping occupied, i.e. going out/activities/hobbies with others.
Information from the website and local services.
Live in carer- family.
Day Care Support offering respite for the carers and a change of scene for the person living with dementia.
Helpful that my partner has attended Alzheimer’s support groups – he has felt empowered, which has helped me.
Alzheimer’s Society.
Meeting people that I feel comfortable with.
Support groups- meeting those with shared experiences.
Peer support.
Awareness and understanding in the local community, e.g. shops, pubs, staying part of local groups, GP surgery.
Help the carer gives us each morning.
24-hour home care.
Where people have knowledge of the condition.
Question 2: “In my situation and the help we receive one thing that hasn’t worked so well for me is…..”
The answers from people living with a diagnosis of dementia or memory impairment:
Having to tell your story over and over.
General lack of understanding.
Lack of coordination between agencies/ services- no single point of contact.
Difficulty getting a GP appointment.
Nothing. It’s been good.
Not all medication being appropriate for me.
Over- zealous diagnosis (suspected diagnosis). Meds.
Not seeing family as much as I’d like.
Lack of transport.
No support, i.e. follow ups from diagnosis forward, no guidance or monitoring.
Discharged without a plan. The answers from carers and family members:
Lack of appropriate information at time of diagnosis.
Disjointed nature of services. Lack of communication between them and from them to me/us.
Not knowing where to go for help.
Not feeling listened to by Health Care Professionals – carers concerns being ignored.
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Lack of follow up after diagnosis - “there is nothing we can do (for your wife)”.
A Single Point of Access is lacking.
Discharged without a plan.
Being discharged from social services and having to start again from scratch.
Inadequate GP or memory clinic follow up.
Memory clinic doesn’t follow up.
A long term condition, but we self-fund, it’s so unfair.
Time with GP is too short/ GP continuity is not always good.
Surgery didn’t know about Carers Register.
I would love to be able to go shopping without my husband.
Too much information too soon. (From Alzheimer’s Society).
Seems unfair that someone who is not in receipt of disability benefits has to repeat their application for a blue badge and justify their application and give details on their infirmity.
Not see as much of family as would like or need.
Need more breaks.
No negatives!
Question 3: “In my situation and the help we receive one thing that has been missing for me is….” The answers from people living with a diagnosis of dementia or memory impairment:
Not necessarily aware of what is available.
Support for all involved.
Care/ support before a crisis happens.
More responsive transport.
More social contacts.
Point of contact/knowledge. Training/educate carer and cared for via professional, or peer support.
Access to definitive diagnosis on the NHS.
Clinical follow up.
Question 3: “In my situation and the help we receive one thing that has been missing for me is….” The answers from carers and family members:
Have had no support or information at all since diagnosis.
Information on what’s available, i.e. respite, support groups, any help at all – how do we get back in the system?
A list of appropriate support locally.
More responsive home visit when the carer requests help.
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A specialist nurse such as an admiral nurse.
Advice on interactions between medications.
A befriending service for cared for so that Carer can have respite time.
Frequent and regular assessments.
GP to see carer separately so they can talk openly.
GP’s offering home visits for patients with LTCs and actually coming.
A single source of information.
Absence of/ lack of benefit from yearly primary care (QOF) dementia review and medication review.
Joined up thinking and communication between services.
Respite – free or reasonable price and regular.
Online right time, right thing journey support for carers/ person living with dementia. Equipment/ personal aids etc.
Lack of support for the person with dementia to use transport and access support groups when driving licence has been lost.
Reassessments.
Advice on how to help to keep my husband contented, relaxed and happy.
Variety of communication/ information types (internet, on paper, font sizes etc).
Localised support for carer and person with dementia.
Abandoned after a few appointments without consultant.
More focused help for Alzheimer’s patients.
Do GP’s and hospital staff know enough about dementia?
More integration of services.
Carers assessment’s - each and all. ___________________________________________________________________
Question 4: “One thing that would be part of really good support in the future for me is …..” The answers from people living with a diagnosis of dementia or memory impairment:
One point of contact.
Being better informed.
A map of NHS and support services to see how they all fit on my journey.
Single website to give answers to questions; facilities; research.
Less fragmented support agencies/ funding. More joined up.
The person with dementia having more activities, day services, meetings.
The carer having better Communication/ talk/ support. The answers from carers and family members:
More funding, (in billions) prioritised.
More support (frequent and funded) to enable young carers to go out and be a proper teenager not rigid rules around attendance, deadlines etc.
More support to save my own life without guilt.
A coordinator/single point of access 24/7.
Getting help when you need it.
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Directory of what is available.
Not having to repeat yourself over and over to different people.
Advice on future care options re: decisions for the future.
Regular reviews of health, welfare and medication and referrals.
Financial cap.
Co-ordination and organisation between the services, including respect for all members of the family
Expert in dementia in GP practices.
Respite care without bankruptcy and good quality.
A video on impact of dementia.
The person with dementia having more activities, day services, meetings.
Counselling.
Well trained carers easily available.
Practical support to help us to remain at home.
Continuing support from family and statutory services.
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4. Question and Answer Session
Towards the end of the afternoon a panel of professionals took questions from the audience. These questions had been written down on cards throughout the day. There was not the time to answer all the questions. Here are the ones that were answered. These answers were written down at the times by Lucy Martin of Carers Bucks: Panel:
John Everson – Specialist Commissioning Manager, Integrated
Commissioning, Buckinghamshire County Council
Chris Ramsey – Consultant Psychiatrist, Oxford Health
Becky Dow – Consultant Psychologist, Oxford Health
Maxine Foster – Older Adults Mental Health & Dementia Commissioning
Manager, NHS Buckinghamshire Clinical Commissioning Group
Jo Birrell – Nurse Consultant, Older People, Buckinghamshire
Question 1: Can you confirm you are busy stealing best practice from others across the UK? Answer: MF: NICE guidelines are used to develop strategies and policies for best practice. We have recommissioned the Memory Support Service and our commissioning strategy has been in place since 2015. Question 2: Hospitals must make much better arrangements so that when someone with dementia is in hospital, their carer/loved one can stay with them throughout their stay – automatically and without question. Answer – JB: We looked into implementing John’s Campaign, where a carer is able to be with the person they care for with dementia 24 hours a day when they’re in hospital – i.e. overnight stays. Not all hospitals have room space for overnight stays for carers. However, feedback from patients was that some didn’t want to be defined by their dementia and also patients without dementia fed back that they, too, would like people to be able to stay with them. So, open visiting now exists. Question 3: Respite on a short-term basis from 1 night to less than a week – not bank-breaking! Answer: JE: Bucks County Council is currently out for consultation on a new short breaks policy, which is due in October. Keen to support more local development of respite within communities. Attendees were invited to look at the BCC website to have their say to help shape policy. Question 4: When a diagnosis is given, why isn’t there an automatic process to notify those living with dementia and their carers of the benefits and services they are entitled to? Answer: CR: CR was surprised that people felt this was the case. The Memory Clinic is diagnostic and support following a diagnosis is usually from voluntary services like the Alzheimer’s Society. The support has become more integrated over the years, but a clear roadmap is needed. It’s important to strike a balance – some people feel they
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haven’t been given enough information after diagnosis, whereas some people feel inundated. Need to employ a person-centred approach regarding information. Question 5: A carer who hadn’t been able to come to the conference wanted to share the following: “I have a husband who has a diagnosis of dementia. He went on to have a serious head injury from a fall which required 7-hour surgery in Oxford. On discharge he had Reablement for 2 weeks but had a further fall requiring a hospital stay of 1 week. We then had to arrange out own carers. A senior physiotherapist recommended that my husband have neuro rehab but the consultant there suggested the head injury centre would be more suitable. The commissioning clinician at the head injury clinic turned us away saying they do not support people with dementia. Is this correct? Will they not support any dementia patients? If so, this makes health care not just a postcode lottery, it is a disease lottery. Answer: JB: Resourcing can be an issue, and neuro physio can be as and when the resource is available. JB had not known the head injury clinic to turn away someone with dementia, but said it may have been that another service/organisation could have been better or more appropriate. Question 6: Sue Wilson described the fragmentation of services in Bucks. Bucks is a vanguard to bring health and social care together (ICS). How will this improve integrated support for people with dementia? Answer: MF: We are looking at how best to achieve this and today has been about looking at this issue now and over the next year. There will be changes to the whole pathway, involving Clinical Commissioning Group, Buckinghamshire Health Trust, GPs and Oxford Health. All need to be working better together. JE added: Bucks is one of eight integrated care pilots – integrated commissioning services in health and social care. Need to work better together to save money and deliver more joined-up care for patients. Question 7: Why isn’t there a single point of contact after a dementia diagnosis? Answer: CR: The Memory Clinic covers the north and south of the county. Telephone advice is available. If someone is discharged from the Memory Clinic, they’re encouraged to get support from their GP. This isn’t passing the buck. Someone may have other issues – physical – as well as memory issues. A return to the Memory Clinic is possible if appropriate. BD added: We need to explain that the Memory Clinic is about diagnosis, then after that support is from the GP. Joined-up working is important. The Memory Clinic isn’t a “one-stop shop” – we need to provide more information about what happens next. Question 8: Dementia-aware nursing staff in hospitals (many stories of horrendous treatment.) Answer: JB: All staff at Bucks Health Trust have training in dementia awareness each year – from the cleaners to the consultants. We check the effectiveness via quality rounds – e.g. if there’s been a complaint that someone with dementia or their family/carer has been spoken to inappropriately then we learn from that that the training isn’t being put into practice. Further training then given. Question 9: Can we be sure that organisations are training staff in dementia awareness for when booking clinic appointments?
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Answer: CR: Staff at the Memory Clinic are trained to offer appointments at appropriate times for patients. Question 10: Did the NHS fund the Alzheimer’s Society and has that funding been withdrawn? Answer: MF: In 2016 the Memory Support Service was recommissioned to the Alzheimer’s Society. Funding from BCF – Better Care Fund. One of the purposes of today is to look at gaps in any future services. Question 11: The groups have been invaluable. Why aren’t there more specifically for those with early onset? Answer: BD: Different people have different needs. There’s a new project from Mind regarding young-onset dementia and they are hearing from carers and people with young-onset. We can also learn from other counties. Important to tailor to individuals. Some feedback suggests that not everyone finds groups useful. We need to open up what type of support is available and where it is. Some people with young onset may be working and have responsibilities for children and need to understand what support is available. Question 12: Why does Bucks not have the benefits of Admiral Nurses across the county? Answer: MF: When the Memory Support Service was recommissioned, we looked at Admiral Nurses. The challenge is we already had two providers – Age UK in the west of the county and Alzheimer’s Society in the north. The contract went out to tender. We were looking at what people in Bucks wanted. Admiral Nurses were invited to tender but chose not to. If a provider chooses not to tender, there is nothing we can do.
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5. Answers to questions that were not answered on the day: These are the questions that time did not allow an answer to on the day. Question 13: Were the mental health staff invited to the event? If so where were they? Answer from: NHS Buckinghamshire Clinical Commissioning Group, Bucks County Council, Alzheimer’s Society and Carers Bucks: - No they were not. A decision was made in the very early stages of planning for the conference that the day belonged to carers, people living with Dementia/Alzheimer’s and people with Mild Cognitive Impairment. The event was not open to everyone. This next group of questions (Questions 14-22) were answered by Buckinghamshire Integrated Care System: Question 14: Out of hours support – carer specific help for people with Alzheimer’s and for the family needed. No active role by GP/Social Services we are just abandoned. Could something be put in place please? Answer:
When help is required Out of Hours; we recommend calling 111. The Bucks
111 service has access to both GPs and social services out of hours.
Therefore patients and carers should therefore be able to access appropriate
support 24 hours a day.
In addition, there are 24 hour helplines that patients or carers can call directly;
1. Alzheimer’s Society; 0300 222 1122
2. Dementia UK ; 0800 888 6678
The on line Buckinghamshire Dementia Roadmap also provides high quality
information about the dementia local services, support groups and care
pathways.
https://dementiaroadmap.info/buckinghamshire/
We would also encourage early engagement with the Memory Support
Service in Bucks to discuss care planning and crisis avoidance, Telephone
01296 331749 or email [email protected]
Question 15: Can we put pressure on the NHS to acknowledge the extent of the dementia problem? Answer:
Dementia is already a national high priority area for the NHS. It is recognised
that over 850,000 people in the UK currently have dementia and that by 2050
the numbers are anticipated to exceed 2 million.
With this in mind the Prime Minister Challenge on Dementia has therefore
mandated that by 2020
o We identify 2/3 of the population who have dementia
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o we improve quality post diagnostic support for people with dementia
and their carers
o we support a timely diagnosis and access to appropriate treatment
and care, i.e. within 6 weeks from a GP referral
NHS, CCGs and local authorities are actively supported and managed to collaboratively deliver this important mandate. https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020/prime-ministers-challenge-on-dementia-2020 Question 16: How are all the organisations linked? Where does Adult Social Care fit in with everything else? Answer: We all work together to support people with dementia and their carers;
NHS GPs and memory clinic teams in hospitals.
Local Authority including Adult Social Care and Prevention Matters.
Third sector support Alzheimer’s Society (Memory Support service) and
Carers Bucks.
The good news for our county is that Buckinghamshire was selected last year
to be one of the first eight areas in the country to set up an Integrated Care
System following planning work by the County Council and the NHS. This
idea of closer working was first set out in a five-year plan for health and social
care through to 2020 which called for better integration of GP, community
health, mental health and hospital services as well as more joined-up working
with local government.
The aim is to provide seamless care and support to enable people to live
happily and well and as independently as possible. We are aware that this is
still not as good as we would like it to be, but we are working hard together to
make this vision a necessary reality.
Question 17: When there are trials, why are some dismissed due to a low score? There are so many factors for a low score on a specific day. Answer:
Dementia is diagnosed when there is decline in memory or other thinking
skills severe enough to reduce a person's ability to perform everyday
activities. If someone performs poorly on a memory test, but they are
functioning normally with their everyday skills, they do not have dementia.
Memory screening tools are used by clinicians to assess memory. However a
number of factors can affect the scores and these need to be taken into
consideration when doing an assessment. Ideally the patient should be warm
and relaxed and not stressed. In addition they should be physically well. The
environment should be quiet, warm and comfortable with good visibility. Whilst
someone may not score well on a memory screen, this does not automatically
mean they have dementia. Other causes for a decline in memory can be
infection, anaemia, thyroid problems, depression etc. and so it’s important that
these are also considered.
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If there’s doubt that the conditions were less than optimal, we would
recommend repeating the screen at another time. In Bucks, the Memory
Support Service offers memory screening at home, where the patients feel
comfortable and relaxed.
Dementia Research trials have very strict criteria for inclusion in order to have
qualitative measurable results to make published evidence based
recommendations. Each trial has different criteria and it’s worth discussing
with the individual researchers the inclusion and exclusion criteria for specific
trials. We encourage patients with and without dementia to Join Dementia
Research, as whilst you may not be eligible for one trial, it is likely there will
be another in which you can participate.
https://www.joindementiaresearch.nihr.ac.uk/beginsignup
Question 18: The services do not work together - we have to chase all the time, nobody gets back to us so we give up. Answer:
We understand that this is not ideal and very frustrating. We recommend
people to call the Memory Support Service in Bucks as the single point of
access in Bucks for advice and advocacy. Telephone 01296 331749 or email
Question 19: Why are there no reassessments for medication (can this be stopped). Answer:
Medication reviews should be done at least annually or more frequently if
there are any concerns. These can be performed by the hospital Memory
clinic or by the GP at their annual Dementia Care Review.
Medication can be stopped if it is no longer effective or if it’s causing side
effects. Likewise it can also be used long term or lifelong if appropriate. We
would recommend discussing any concerns regarding medication with either
your GP or the Memory Clinic.
Question 20: We need a chart to show the interaction of various organisations so that, when problems arise carers and/or service users know where to turn for help. Answer:
The online Buckinghamshire Dementia Roadmap also provides high quality
information about the dementia local services, support groups and care
pathways.
https://dementiaroadmap.info/buckinghamshire/
Question 21: I feel as though I am on my own. I have said that to my GP but nothing changes. Answer: We know that both people with dementia and their carers can find it isolating and at times difficult to find the right support. We would recommend contacting
1. Memory Support Service; Tel 01296 331749 or email
2. Carers Bucks; Tel; 0300 777 2722 or Email: [email protected]
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3. Consider contacting services that are available in Bucks, as listed on the
Dementia Road Map https://dementiaroadmap.info/buckinghamshire/
Question 22: Connect all the dementia services together – or a wheel like Sue Wilson did would be very useful – this would need to be something like – when this happens this is where you go etc. This should be for all the possible stages of dementia. Even the services themselves don’t know where to send us. Answer:
We recognise it is important that we have a truly integrated seamless service
in Bucks for our community of people with dementia and their carers. We
agree that whilst there may be good individual services, not all services are
aware of what’s available in Buckinghamshire. Our aim is to improve this, and
this will be supported by Buckinghamshire becoming a new Integrated Care
System, meaning that seamless care should become a reality.
Currently, the Dementia Road Map is a good comprehensive resource for
both services and patients/carers.
https://dementiaroadmap.info/buckinghamshire/.
In addition, we would recommend contacting the Memory Support Service
(Tel 01296 331749) to provide advice and guidance- particularly when it’s
unclear what should be happening/ or what is available as support.
Responses to carer’s questions – from Carers Bucks
Question 23: There is a lack of opportunity for learning and training – what’s going to be done about it. Answer: Following on from this conference we are now reassessing our training plan for the county. We will take into account the feedback from the conference to shape the training plan accordingly. All training opportunities will be listed in our newsletters, on our website and in GP surgeries. Question 24: What support is out there? And how do we find it? For carers and for those living with dementia. Answer: Carers Bucks runs 24 carers support groups throughout the county including an evening group, mental health group and young onset group. Carers Bucks have a team of skilled support workers who can talk to you on the phone and are very knowledge around the challenges carers face when caring for someone living with dementia. We run carer’s awareness events in GP surgeries highlighting the importance of identifying and supporting carers. We encourage carers to identify themselves as a carer and ask to be put on the carer’s registration system this ensures that the surgery staff know you are a carer. We also have a carer’s support worker at Stoke Mandeville, Wycombe and Amersham hospitals. We have a dedicated over 75’s service. This for carers (over 75) who would benefit from seeing a support worker who would visit at home if needed.
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Question 25: Are there any services that can cover care on a short term basis eg. 1 day/evening (akin to babysitting)? BCC and CCG. Answer: A copy of Buckinghamshire County Council Services Directory can be obtained from Carers Bucks. This directory lists care services available in the county. Question 26: More telephone support? Answer: Carers Bucks specialists support workers have many years of experience in offering telephone support to carers caring for someone with dementia. A home visit can be arranged or a visit to our office. Question 27: I feel as though I am on my own. I have said that to my GP. Have tried Age UK befriending – waiting 3 months. Years ago Carers Bucks were a help but I now feel left to it. Answer: Carers Bucks is here to offer support and guidance when needed. This can by telephone support, home visit, support groups. We also work in the community, in GP practices and in Hospitals. If you need help please contacts on – 0300 7772722 of via our website www.carersbucks.org or email – [email protected] Question 28: Why am I not able to claim carers allowance just because I am over 65 – I am doing an important role that saves the NHS and Government thousands of £’s. Answer: Carers Allowance is a replacement earning benefit from the Department of Works and Pensions. Its purpose is to financially support Carers of a working age who cannot work, or are on a reduce income, due to their caring commitments. Anyone in receipt of their state pension is not of working age and therefore are not eligible. Question 29: How can the state let a Young Carer live in a hostel and caring for her mother (very ill) and threatened with eviction. Answer: When these complex situations arise, services work together to help resolve the issues raised and to find the best outcome for all involved. Some of these cases are isolated and it is difficult to unpick all the complexities that lead to those that were raised at the conference. Each situation is looked at individually and there is no one answer to the question. Carers Bucks have a dedicated service for Young Adult Carers who have expertise in putting a circle of care around the young people to enable them to cope.
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6. What’s next It is important when people are consulted about services that their views are acted upon. Otherwise an exercise like this conference can seem like a token gesture without any real ability to influence anything.
We understand that actions have already been taken by service providers to change and improve services based on feedback received at the conference, even before this report was completed. This is very good news.
This report from the conference will be discussed at the Dementia Partnership Forum (members include representatives from Buckinghamshire CCG, Oxford Health Foundation Trust, Buckinghamshire Healthcare Trust, Buckinghamshire Local Authority, South Central Ambulance Service, Alzheimer’s Society, Carers Bucks, third sector partners, Patients and Carers) . Key areas of improvement will be identified and an action plan will be developed accordingly. This will be shared with the organisations of the representatives attending the Dementia Partnership Forum and also with the Dementia Delivery Board, to inform and influence the future commissioning plans of dementia services in Buckinghamshire. The outcome and results from the action plan will be published and shared with the public in 12 months. It is hoped that the Dementia Conference will continue to be held annually, in order to share information about the local dementia services, but also to gather public feedback on the existing services and inform further improvement.
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7. Summary of attendees’ written evaluations
• Attendees were invited to fill in a six-question evaluation survey at the end of the conference, including space for additional comments.
• In total, we received 58 responses • To note: not everyone answered every question on the form and some people
gave more than one tick per question. • Graphs created by Lucy Martin, Carers Bucks.
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A summary of people’s open comments: From the written evaluations here are people’s open comments word for word. They have been grouped as follows: What Worked Well?
It gave me the opportunity to speak to people already dealing with Dementia
Very well lead and co-ordinated by Mike Roarty (Facilitator). Very uplifting contributions, especially from Wendy Mitchell. Excellent organisation
Wendy Mitchell & those who shared their experiences were fab
Wendy’s talk very inspirational. Mike was a great facilitator
Very well organised. Content excellent
Excellent punctuality. Well thought out, organised; sensitive to the needs of the elderly. Variety of communication methods. Thoroughly enjoy the entertainment choir. Songs were a blessing
Thank you. The day has been interesting and informative. All well organised
A very well run conference. Thank you
Never having been to a conference before I wondered if it all might go over
my head. Far from it! It was inclusive, involving, very informative. I learned a
lot. Many thanks for a well thought out programme. Great Facilitator for the
event too!”
All very good. We are at the early stages and I have heard a lot about the future and feel better informed
Very useful to share the experience of being a carer with other carers. Reinforces the importance of support groups & pressure groups to improve essential services & support to carers
Well done. A very well run and enjoyable day. Excellent lunch provided. Thank you
Good to hear other carer views
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As a table facilitator I felt my role useful – I’m glad I offered, anytime I’m available
Very friendly – breaks the ice
Great to get to meet people with likeminded issues. Hear what is on offer & helpful & what’s got to be done
I’ve learned a great deal from this. Thank you.
Good opportunity as a provider to gain feedback on services within Bucks
Best thing was to discover that there are sources of help of which I was previously unaware
Suggestions for improvement
When filling evaluation survey letting you know if I am a carer or a person with memory issues may help!! ”
(Under Question 5: Have you been able to obtain information about local
dementia services?)”I was looking for more information about companies or
networks offering paid-for, one-to-one visits/care. This conference focussed
on NHS & council care & services instead. So our interests were slightly at
odds” (Under Feedback) “Would have liked to pick up more contacts &
knowledge about paid, private befrienders/companions. I am looking for this
for my mother and can afford to pay – what I need is the contacts for
reputable & trustworthy carers/befrienders.”
The venue was great with plenty of parking but next time a lot more could be done to make the conference ‘dementia friendly’ and inclusive for all attendees. More signage for the toilets! Bigger font on the seating plan/visual table plan. Labels on the food at lunch – the lack of labels caused concern! Bigger font on the name badge stickers – all the font was too small (attendees were struggling to read names on badges)”
Not to be held on a Friday. Slightly shorter – long day for some attendees. Quiet room – wasn’t used solely for that purpose
Be more help for High Wycombe Bucks Information
Could have done without the ‘stories’ – not very valuable to me. Panel Question and Answer session
I felt That there was a disconnect between what the profession managers think is happening at the patient level & what the patient feels has been delivered
More time was needed for the panel to answer questions from the audience
Other than Ramsey from Oxford Health NHS Trust who spoke clearly, answered well & understood the needs being highlighted the rest of the panel spoke words, jargon & frankly provided little hope or positivity. This was the session with the least value by half. A real irritation
A good airing of the issues but there remains disconnect between health professionals and service users impressions of what is happening on the ground
Final session. Important question was poor
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What happens next:
The conference was very good – it now depends on what comes out of it!!”
Funding is most important and I mean. Billions. and listening to other people’s thoughts, carers + staff
I think more funding is needed before we see any improvement in the resources provided
I do hope that all the information that is “fed up” to the higher echelons actually results in action, and soon, rather than endless meetings, policy decisions, etc
I hope the relevant authorities can put into place the feedback from today to join the dots between the community services and one point of contact and clear pathway to information on and ongoing basis to deeper the cared for & carers journey on the dementia pathway
A smaller meeting took place in Buckingham last year, but nothing seems to have changed for the better!”
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Appendix 1
Afternoon session: Your views of dementia services – The complete record
The first part of the afternoon gave everyone an opportunity to answer the following questions:
1. What works well for you in your situation and the help you receive? 2. What’s not working so well? 3. In your situation and the help you receive what has been missing for
you? 4. What would part of really good support in the future for you?
With the understanding that they might have different answers to these questions we invited people living with the conditions to sit together, and carers and family members to sit together. Of course if people did not want to do this that was fine. This enabled us to show below what the answers are from the two perspectives. Table facilitators asked people the questions and recorded their answers. The following answers are those that were prioritised by people at the table exercises. At most of the tables each person prioritised what was most important to them by using two votes to pick the most important two answers to the question, from those that had been written on the sheet during the discussion. The most important two answers per table are shown below. Where there were equal firsts all of these are shown. Where there was one ‘first’ answer and then ‘equal second’ answers, all of those are included. The numbers in brackets show how many people voted for that answer. Two tables followed a different prioritisation process by collectively deciding which were the most important answers, rather than voting individually. These are shown with ‘1st’ or ‘2nd’ at the start of the answer. Some tables gave a small number of answers with no prioritisation. The answers are not shown in any priority order The answers have been grouped together to show the re-appearing themes. A summary of the answers appearing most often is shown in section 3 of this report, starting on page 4. ___________________________________________________________________
Question 1: “In my situation and the help we receive what works well for me is…..”
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The answers from people living with a diagnosis of dementia or memory impairment:
1st - Helpful neighbours.
1st - Getting a diagnosis.
(3 ) Organised group meetings (e.g. today’s event).
(2 ) NHS- Notably general practice
(2 ) General practice, notably referrals.
(3 ) Alzheimer’s Society, DIS and follow-on GP.
Meeting people that I know 1 feel comfortable with
Being connected with other people and things. Keeping occupied ie going out/activities/hobbies with others
(3 ) Love of my husband/ spouse.
The answers from carers and family members:
(5 ) Being able to continue with my hobbies (this is made possible by family support). This is so important.
Being connected with other people and things. Keeping occupied ie going out/activities/hobbies with others
(5) Support from family and friends, I.e. today Son took time off work to allow career to attend conference. Third party support too.
(3 ) Non- public support – friends, family and work who have had similar situations/ experiences, someone to say, ‘you are doing the right thing’ (emotional)
(3 ) The understanding of family and friends.
(1 ) Complete dedication.
(1 ) Going out with friends, talking.
(1 ) Family support.
(2 ) Support from family and friends
Support and time together.
(4 ) Live in carer- family.
(1 ) Help the carer gives us each morning.
(1 ) 24-hour home care.
(5 ) Day care service in Bourne End (and in Totteridge) – How would I find it?
(2 ) Day centre (up to 4 days per week).
(3 ) Lindengate & Safehaven Day Care Support offering respite for the carers and a change of scene for the person living with dementia.
(4 ) It helped me that my partner was proactive with the Alzheimer’s Society. Information from the website and local services.
(3 ) Helpful that my partner has attended Alzheimer’s support groups – he has felt empowered, which has helped me.
(2 ) Alzheimer’s Society.
(1 ) Carers Bucks (Haddenham).
(5 ) Carers Bucks services.
(6 ) Finding Carers Bucks who act as a one stop shop for information and advice “a useful ear”.
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(1 ) Support and information from “care and share” group at St Mary’s Beaconsfield.
(1 ) Where people have knowledge of the condition.
Meeting people that I feel comfortable with
(2 ) Support groups- meeting those with shared experiences. Carers continue to attend e.g. CB Young Onset, Alzheimer’s Society Support Group (practical).
(2 ) Peer support.
(2 ) Awareness and understanding in the local community e.g. shops, pubs, staying part of local groups, GP surgery.
(1 ) - Support from GP surgery (Chess Medical Centre).
(2 ) - Having a power of attorney.
Question 2: “In my situation and the help we receive one thing that hasn’t worked so well for me is…..”
The answers from people living with a diagnosis of dementia or memory impairment:
(1 ) - Having to tell your story over and over.
(1 ) - General lack of understanding.
(3 ) Better coordination between agencies/ services- single point of contact.
(3 ) Difficulty getting a GP appointment.
Lack of transport
No support ie follow ups from diagnosis forward ie no guidance, or monitoring
Discharged without a plan
(2 ) Nothing.
(2 ) Not all medication being appropriate for me.
(2 ) Over- zealous diagnosis (suspected diagnosis). Meds.
(2 ) Not seeing family as much as I’d like.
The answers from carers and family members:
(7 ) Not feeling listened to by HCP’s – carers concerns being ignored – ambulance/ 111 services not taking concerns seriously even though carer knows ‘red flag’ that ‘cared for’ is unwell, this could be due to being a young carer.
(3 ) Community Psychiatric service (especially psychiatrist). Decisions/ communication etc. Members of staff and communication.
(6 ) A SPA is lacking - have to speak to everyone involved separately is exhausting. Needs a dementia service coordinator.
(4 ) No key person /case worker means no clear pathway of support.
(3 ) Fragmentation of services who don’t talk to each other, e.g. OT, wheelchairs, SACT, very hard to manage all the contacts while caring etc.
(4 ) Knowing who to contact.
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(2 )nd Not knowing where to go for help.
(4 ) When services aren’t joined up and then you are sent round in circles.
(4 ) Awareness of what is out there and how to access it. “We don’t know what we don’t know”. Fragmented.
o Time with GP is too short/ GP continuity is not always good. o Surgery didn’t know about Carers Register.
(4 ) Lack of appropriate information at time of diagnosis.
(1 ) More information when diagnosed – about support service.
(1 ) Too much information too soon. (From Alzheimer’s Society.)
(6 ) Communication (or lack of) between different services/ agencies, i.e. memory clinic, GPs: carer feels like “piggy in the middle” and is asked to pass on messages i.e. from memory clinic to GP but then GP won’t take carer’s word for it. Not feeling listened to by HCPs.
(1 )st -Disjointed nature of services.
(6 ) Lack of follow up after diagnosis – since diagnosis at clinic no follow up review and “there is nothing we can do (for your wife)”. Negative attitude from professionals.
(3 ) No regular follow ups.
(5 ) Inadequate GP follow up.
(5 ) memory clinic doesn’t follow up.
No support ie follow ups from diagnosis forward ie no guidance, or monitoring
Discharged without a plan
(4 ) The memory clinic – no follow up care/ advice after diagnosis/ medication given.
(6 ) Being discharged from social services and having to start again from scratch.
(4 ) A long term condition, but we self -fund, it’s so unfair. There are cost implications for most services.
(1 ) Seems unfair that someone who is not in receipt of disability benefits has to repeat their application for a blue badge and justify their application and give details on their infirmity.
Not see as much of family as would like or need
(3 ) I would love to be able to go shopping without my husband.
(1 ) Have a little time without husband occasionally.
(1 ) Need more breaks - NHS support.
no negatives!
Question 3: “In my situation and the help we receive one thing that has been missing for me is….” The answers from people living with a diagnosis of dementia or memory impairment:
(1 ) - Support for all involved.
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(2 ) - Care/ support before a crisis happens.
Point of contact/knowledge. Training/educate carer and cared for via professional, or peer support
(6 ) Not necessarily aware of what is available.
(1 ) Access to definitive diagnosis on the NHS.
(1 ) Clinical follow up.
(3 ) More responsive transport.
(3 ) More social contacts. The answers from carers and family members:
(7 ) Has had no support or information at all since wife’s dementia diagnosis (at Whiteleaf 2 years ago), so what is missing, is information on what’s available i.e. respite, support groups, any help at all – how do we get back in the system?
(4 ) Absence of/ lack of benefit from yearly primary care (QOF) dementia review and medication review
(2 ) Abandoned after a few appointments without consultant.
(3 ) Reassessments.
(2 ) - Frequent and regular assessments.
Possibly could need carers assessment’s - each and all. Assessing ‘impact’ on the carer – how their role is impacting on their lives
(7 ) GP to see carer separately so they can talk openly.
(7 ) GP’s offering home visits for patients with LTCs and actually coming out to do a home visit when the carer requests help.
(1 ) Regular visits at home (CPN).
(7 ) A single source of information – caring is ‘relentless’ and one doesn’t have time to search / call multiple services.
(4 ) Would like to know what I am missing. Lack of awareness - help to find what is available.
(2 ) Single point of access to information. o Do GP’s and hospital staff know enough about dementia?
(3 ) Making sure appropriate information is available at diagnosis.
Point of contact/knowledge. Training/educate carer and cared for via professional, or peer support
(3 ) Sharing of information – services talking to each other. Designated professional.
Person-centred, holistic approach/ integration of services.
(2 ) Advice and information regarding medication doses and when to change.
(2 )nd - Advice on interactions between medications.
(3 ) Advice on how to help to keep my husband contented, relaxed and happy.
Variety of communication/ information e.g. papers and font size, not just the internet
(3 ) A navigator/ project manager to guide us through.
(4 ) Joined up thinking and communication between services.
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(4 ) Respite – free or reasonable price and regular.
(3 ) A befriending service to give a couple of hours respite with a “new friend” (for the cared person) (included for couples).
(2 )nd - A befriending service.
Gap between hospital and voluntary services.
(4 ) Online right time, right thing journey support for carers/ person living with dementia. Equipment/ personal aids etc.
(4 ) Lack of support for the person with dementia to use transport and access support groups when driving licence has been lost.
(3 ) Localised support for carer and person with dementia (High Wycombe).
(1 )st - A list of appropriate support locally.
(2 )nd - A specialist nurse such as an admiral nurse.
(3 ) No active role by GP or Social Services.
(2 ) More focused help for Alzheimer’s patients. __________________________________________________________________
Question 4: “One thing that would be part of really good support in the future for me is …..” The answers from people living with a diagnosis of dementia or memory impairment:
(1 )st - One point of contact.
(1 )st - Being better informed.
(3 ) Single website to give answers to questions; facilities; research.
The carer having better Communication/ talk/ support –
(4 ) A map of NHS and support services to see how they all fit on my journey.
(3 ) Less fragmented support agencies/ funding.
The person with dementia having more activities, day services, meetings
(3 ) Memory clinic to contain someone from Alzheimer’s Society- so they’re more joined up and so everyone gets their support following diagnosis, so you know you can live well with Dementia and MCI.
The answers from carers and family members:
(6 ) Getting help when you need it/ not having to repeat yourself over and over to different people.
Improving access to services and improving communications. * Directory of what is available for carers and service users.
(4 ) Advice on future care options re: decisions for the future.
(6 ) A coordinator/single point of access.
(4 ) One point of contact (Central Information Centre).
(2 ) One designated professional to link other services (e.g. as listed by Sue Wilson).
(2 ) One key worker or service to be with us on all of our journey and be in regular contact with us.
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(4 ) Dementia navigator with a single phone number answered by a real person.
(2 ) Someone on the end of a phone 24/7 to always point us in the right direction for help/ support.
(2 ) Regular referrals.
(4 ) Annual reviews of health, welfare and medication.
(3 ) More regular reviews with same GP, especially when on medication.
(3 ) Expert in dementia in GP practices.
(3 ) Co-ordination and organisation between the services, including respect for all members of the family.
(6 ) Common sense from service providers
(2 ) A video of how the person living with dementia is feeling/ seeing, so carers have a better understanding.
(3 ) Respite care without bankruptcy and good quality. (N.B It is a respite for the person with dementia too from normal routine, this stops ‘carers guilt’).
The person with dementia having more activities, day services, meetings
The carer having better Communication/ talk/ support
(6 ) How do I proceed from here and save my own life without guilt? Words of a carer who has no support and has to give up her hobbies.
(2 ) Counselling.
(2 ) Well trained carers easily available.
(7 ) More support (frequent and funded) to enable young carers to go out and be a proper teenager and understanding from schools and colleges about a young carers responsibilities – there needs to be flexibility and support not rigid rules around attendance, deadlines etc.
(2 ) Practical support to help us to remain at home.
(2 ) Proactive and regular support.
(2 ) Continuing support from family and statutory services
(4 ) Financial cap.
(3 ) Better resources and funding for services. Recognise Dementia as a disease.
(1 )st - More funding, (in billions).
(2 ) More funding for activities for younger service users.
(2 ) Funding to remain for care services.
(1 )st - Abandoning HS2, leading to more investment in dementia services.
(1 )st - No more “twinning” with other towns.