Sensory Loss

Awareness Month

December 2015

Welcome to the first edition of our newsletter, „It Makes Sense‟. There is much work being undertaken across NHS Wales to implement the all NHS Wales Standards on Accessible Communication and Information for People with Sensory Loss. Some of this work is highlighted below and we would welcome your support in sharing this information with your colleagues and networks. The newsletter will be published twice a year and will feature projects and stories from across NHS Wales.

We hope you enjoy reading it.

Here we talk about „Sensory Loss Awareness

Month‟ running through December

In December 2013 the Health Minister, Mark Drakeford, launched the All Wales Standards for Accessible Communication and Information for People with Sensory Loss. This was an historic day – the day when Wales became the first country in the UK to set out clearly how NHS Wales should make information and communication accessible to

patients who are deaf, hard of hearing, blind, partially sighted or have dual sensory loss. Two years on, a national launch of

„It Makes Sense - Sensory Loss

Awareness Month‟ will take place on Thursday 10th December 2015 at the Pierhead in Cardiff led by the Deputy Health Minister, Vaughan Gething. Activities will take place across Health

Boards and NHS Trusts in the month of December each year to raise awareness of the communication and information needs of people with sensory loss amongst the NHS Wales workforce and also, to remind patients of their rights to

accessible communication and information when they need healthcare. To introduce Sensory Loss Awareness Month posters and publicity materials have been developed and will be available to promote awareness of the campaign across NHS Wales. Members of the all Wales Standards Senior Officers Group have been

busy planning different activities to mark the first „sensory loss awareness month‟. Here are some highlights of what‟s planned for this December: The Chairman of Abertawe Bro Morgannwg University Health Board will be leading a local launch of the „It makes Sense‟ campaign at 10.00 am on 10th December 2015 when members of the Quality and Safety Committee will hear presentations about the all Wales Standards and projects being taken forward within the health board. Betsi Cadwaldr University Health Board will be launching their new Sensory Loss Toolkit which is featured in a separate article in this newsletter. Articles will be posted on the intranet of Cardiff and Vale University Health Board throughout December to raise awareness of the communication needs of people with sensory

loss. The Health Board is also planning to host a number of information sessions in the main foyers of Llandough Hospital and the University Hospital of Wales to raise awareness of the

„It Makes Sense‟ Campaign with patients and the general public as well as their staff. Activities to promote awareness of the Standards has resulted in 40 staff coming forward to volunteer as sensory loss champions in Cwm Taf University Health Board. „Sensory Loss Champion‟ events will be held in Prince Charles Hospital on 8th December and the Royal Glamorgan Hospital on 10th December.

The Health Board‟s staff magazine, „Courier‟ will feature the sensory loss awareness training so far completed by 200 staff in Outpatients, Mental Health and Accident and Emergency Services, Ashgrove and Parc Canol General Practices and also, volunteers with the Education for Patients Programme (EPP). Parc Canol Surgery will have a notice board decorated by local school children with „sensory loss themed‟ pictures on display throughout the month of December to raise awareness of the work they are doing to capture their patients‟ communication

needs. Powys Teaching Health Board will be taking the opportunity to showcase the all Wales Standards, the „It Makes Sense‟ campaign and the new sensory loss e-learning programme at their Strategic Equality Plan engagement event on 11th December 2015. The Executive Team in Public Health Wales will be considering a position report on the all Wales Standards when they meet in December and will be talking about how they can raise awareness amongst the Public Health Wales workforce. Campaign posters will be displayed across all sites including screening services. Sensory loss awareness training for staff is also being planned for January 2016. On 8th December 2015, the Royal College of General Practitioners (South East Wales Faculty) will be hosting an Eye Health Regional Workshop for general practitioners and

practice nurses which will highlight the all Wales Standards two years on and include a presentation from a patient perspective.

On Wednesday, 14 October 2015 the NHS Centre

for Equality and Human Rights (NHS CEHR)

hosted Access Matters: making healthcare

environments accessible to people with sensory

loss. Below are the highlights of the day. Delegates from Health Boards and NHS Trusts, Welsh Government and the Third Sector heard about examples of inclusive design and practical solutions to help make healthcare settings accessible to people with sensory loss. Vaughn Gething, AM, Deputy Health Minister gave a keynote address, followed by a filmed contribution from Tracey Cooper, Chief Executive, Public Health Wales. Colleagues from RNIB

Cymru talked about making accessibility a reality and three

individuals with sensory loss shared their personal stories and experience of healthcare. Workshops delivered by Guide Dogs Cymru and Action on Hearing Loss, Cymru explored accessible healthcare from the perspectives of patients with sensory loss and

Abertawe Bro Morgannwg and Cardiff and Vale University

Health Boards shared their experience of integrating the needs of patients with sensory loss into service planning and design. The positive feedback received from

delegates during and after the event suggests that the mix of speakers and workshops was well received. The NHS CEHR will continue to work with colleagues in health and the Third Sector to develop the awareness of the need to plan and design healthcare settings that are accessible to patients with sensory loss. A Conference Report will also be available from our website

at www.equalityhumanrights.wales.nhs.uk/ A key message for the day can be summed up in a quote from the Deputy Health Minister:

Capturing the Communication Needs of

Patients with Sensory Loss

The NHS CEHR highlights the work being

prioritised at an all Wales level to deliver the

Standards including a new national project.

The All Wales Standards for Accessible Communication and Information for People with Sensory Loss recognise the need for GP surgeries and hospitals to capture and record the different communication needs of their patients with sensory loss. The NHS Centre for Equality and Human Rights hosts an all Wales group with members representing the Health Boards

“[Sensory loss needs] should be embedded into the design and planning process so that we achieve genuinely accessible healthcare

not by accident, but by design.”

and NHS Trusts and Third Sector sensory loss organisations. This group has agreed 3 priorities that should enable NHS Wales to fully implement the Standards. A national information

system solution that will record patients‟ communication needs in primary care and transfer this information using the electronic referral process whenever a patient needs to attend a hospital is one of the 3 agreed priorities. There are different patient information systems operating across NHS Wales. Colleagues from Digital Health & Care, Welsh Government and the NHS Wales Informatics Service (NWIS) are working jointly on a national project to scope the feasibility of developing My Health Online as the delivery

model for NHS Wales. There will be a need to agree how patients‟ communication needs will be described and full engagement with people from the sensory loss communities will be undertaken to inform the development of an agreed data set solution.

The all Wales group recognises that new technology alone will not ensure that patients with sensory loss have their communication needs met when they need healthcare. It is fundamentally important for the NHS workforce to understand why this information is being recorded and what they need to do in response to ensure their patients are able to communicate with them. Developing the awareness and understanding of staff is a second priority agreed by the group. This is essential if we are to maximise on the opportunity to improve the patient experience through new technology.

My Health Online

Find out more about My Health Online and how it

is helping deaf people to communicate with their

GPs Telephone based appointment systems in GP surgeries and hospitals are inaccessible to Deaf patients who use British Sign Language (BSL) and

also many other patients who are profoundly deaf. Many deaf patients have no option but to visit their GP surgery or the hospital when they need to make or change an appointment. Val is a member of

Pontypridd Deaf club. Here‟s Val‟s story: „I go to Mountain Ash Hospital for regular eye screening. They sent me an appointment but I had to cancel it

because I was going to a funeral. I text them 3 times but they didn‟t reply. I was stressed so my husband went to the hospital to make sure they knew it was cancelled. The following year I received an appointment but this time I was going on holiday so I faxed them to inform them but they didn‟t reply again. It is so stressful when they don‟t communicate with me. It is the same with the GP. I can‟t contact them so even if I am really ill, I have to go to the surgery. Then they say to me, „come back this afternoon‟. How can I

communicate with them? There is a huge communication breakdown‟. The good news is that patients now have an option to use the internet to book GP appointments or request a repeat prescription. „My Health Online‟ is part of a Welsh Assembly Government initiative to improve patient care through better use of IT and information. It has been developed by the NHS Wales Informatics Service (NWIS) working jointly with general practitioners.

Before patients can start using My Health Online, they must register their details with the surgery. Patients will need to

provide some proof of identity and then they will be given a PIN number to register online and set up an account. Patients must keep their login details safe and only the patient and the GP surgery are able to see the information. A project to improve access to primary care for Deaf patients in the Rhondda Cynon Taf area has been raising awareness of My Health Online with members of Pontypridd Deaf Club. One of the members had found it difficult to register with My Health Online. In response to this, her surgery, Ashgrove Surgery in

Pontypridd, arranged for her to attend the practice with a BSL interpreter and she is now registered with My Health Online!

At the current time 178 general practices across Wales

offer appointments via My Health Online. Patients who are interested in registering for My Health Online should ask the receptionist in their surgery. My Health Text takes off in GP Practices Ashgrove Surgery in Pontypridd is taking part in piloting a new texting service called „My Health Text‟ which reminds patients of appointments and provide health alerts. After the pilot ends,

the service will be made more widely available to all practices in Wales.

Welsh Ambulance Service Medical Information Card

The Welsh Ambulance Services Trust introduced a Medical Information Card in 2013. We look at how the card has helped a Deaf person who uses British Sign Language and would encourage others to do the same Working closely with Deaf and Hard of Hearing

clubs across Wales, the Welsh Ambulance Services NHS Trust has developed a bi-lingual medical information card. The aim of the card is to help Deaf and Hard of Hearing people to relay important information, such as their preferred method of communication, next of kin, medication and medical history in the case of an emergency. The card is the same size as a credit card, and can easily be

kept in a purse or wallet. Andrea shares her story about her

experience of using the card in an emergency and how the card helped her receive better service. Andrea is a Deaf BSL user and has used the card on a few occasions and she recommends that everyone get one. For more information about the card,

visit http://www.was-tr.wales.nhs.uk/Default.aspx?pageId=231&lan=en

Promoting Accessible Healthcare for People with

Sensory Loss

A new e-learning programme is being launched in

December 2015. Lynne MacIntyre, Learning &

Development Manager talks about the new

programme.

The NHS Centre for Equality and Human Rights (NHS CEHR) is delighted to introduce a new e-

Learning program “Delivering Best Practice.” The overall purpose of the program is to promote accessible healthcare for people with sensory loss by providing practical information and suggestions to assist communication within a healthcare setting. The module has been developed in collaboration with RNIB and

AoHL and is the result of an eighteen month project to create a learning program that is specifically designed for staff who work in NHS Wales organisations. The Sensory Loss module is the first in what we anticipate to be a „Delivering Best Practice‟ series aimed at complimenting the overarching equality training “Treat Me Fairly.” By drawing on existing data and people‟s personal experience of accessing healthcare, the module brings to life the requirements set out in the All Wales Standards for Accessible

Communication and Information for People with Sensory Loss. The module, which is fully bilingual, will be available from 10 December 2015 at www.learning.wales.nhs.uk and can be accessed by all staff as well as university students and some third sector organisations. To find out more about this and future e-Learning programmes, please contact lynne.macintyre@wales.nhs.uk or telephone 01443 233398.

„Launch of Sensory Loss Toolkit‟

A new Sensory Loss Toolkit for staff working in

Betsi Cadwaladr University Health Board will be

launched in December. Dawn Cooper, Head of

Service User Experience talks to us about the new

Toolkit. In response to the All Wales Standards for „Accessible Communication and

Information for People with Sensory Loss’, BCUHB has worked with service users to introduce a number of improvements. Raising awareness of the barriers faced by

service users accessing services has been our priority and as a result we have:

Worked with individuals and organisations representing

people with sensory loss to provide training for our sensory loss champions.

Developed communication cards for service users to alert staff of the individual‟s communication needs.

Provided „Hospital Communication’ handbooks for use by ward staff.

An Accessible Health Communication Service has been commissioned from a local Third Sector Organisation to

act as a „bridge‟ between the service user and all Health Services across North Wales.

A baseline audit tool to assess compliance with the standards has also been developed for use in clinical areas and the first stage of the audit completed in our main outpatient areas.

Feedback from service users revealed that, although these initiatives and systems are in place, staff “on the ground”, were sometimes not sure of how to best meet individual

communication needs, for example when and how to book a BSL interpreter. Staff were therefore consulted to identify resources that would help them improves services for people

with sensory loss in clinical areas. The overwhelming suggestion for improvement was the development of a “Sensory Loss Toolkit”, available in both electronic and paper format. The toolkit, funded by charitable funds, will be made available for all clinical areas, alongside additional communication books and a supply of personal listening devices to enhance communication for those who are deaf or hard of hearing. This toolkit will be launched within the Health Board during the month long awareness raising campaign that will commence on

30th November 2015.

A Day in the Life of Huw Harding

Tracey Good met recently

with Huw Harding from

Visual Impairment Merthyr

Tydfil (VIM). Huw talks to

Tracey about his work with

VIM and the training he has

been delivering for Cwm Taf

and Hywel Dda University

Health Boards.

Meet Huw Harding who volunteers with Visual Impairment

Merthyr Tydfil (VIM). VIM provides support to blind and partially sighted people and their families in the borough of

Merthyr Tydfil. More recently, Huw and his colleague, Owen Jones, have been working with Wales Council for Deaf People to deliver sensory loss awareness training for staff in Cwm Taf and Hywel Dda University Health Boards. I met up with Huw at the Kier Hardie University Health Park, Merthyr Tydfil. Tell me a little about yourself I am a former senior manager of a national logistics company.

My sight loss caused my retirement at the age of 49. I had significant experience working with people and I felt strongly that I still had a lot to offer employers, but as someone with sight loss, I found my initial experience of the NHS difficult and I wanted to try and do something to improve it. How did you become involved in VIM? I was signposted to VIM through Nicola Davison[Sight Loss Rehabilitation Officer with Merthyr Tydfil County

Council],who I met via the Low Vision Clinic at Prince Charles Hospital . After my second meeting I was recruited onto the committee. That was nearly 8 years ago. VIM was started 11 years ago by Morgan Evans, a retired GP and through VIM I met Owen who delivers the training with me. We have now been training together for more than 5 years and we also run life skills training such as the „finding your feet‟ programme for the newly diagnosed or those needing a confidence boost,and “Skills for Seeing” training for people with macular degeneration. All of which are aimed at promoting independent living. Tell me about the sensory loss awareness training The training programme covers the all Wales Standards, and Sensory loss- Hearing, Sight and Dual Sensory – Deaf blind and was organised by Liz Jenkins, Equality Manager as part of a project CwmTaf are running with the NHS Centre for Equality and Human Rights, the BDA, Interlink RCT and New Horizons,

Mental Health. VIM are working with Wales Council for Deaf People throughout the project.

We have trained about 200 staff and this will continue throughout next year, with a current target of around 500 staff I have personally benefited from working with John Gilchrist from Wales Council for Deaf People as my awareness of the issues for deaf people is much greater now. We have just started to deliver the same training in Hywel Dda. The groups have included receptionists, nurses, doctors, porters, accident and emergency, mental health services and general practices. The feedback from participants has been very positive. The sessions are interactive and participants have the opportunity

of trying to guide someone with sight loss. We use humour a lot to help people relax and gain confidence. It‟s important for everyone to feel able to ask someone with sight loss if they need assistance. We don‟t want anyone to feel uncomfortable around patients with sight loss. It doesn‟t matter if you get it wrong, it‟s more important that you feel able to approach someone to offer assistance. Do you think that trained staff can actually make a difference to the patient experience?

I can‟t stress enough how important it is. I have personally felt the difference. If you walk into a place and people are looking out for you, I would guarantee they have been trained. When people scatter at my arrival, it‟s obvious they don‟t know what to do and they don‟t have the confidence to approach me. If they are trained they would have the confidence to say, „I can see you have a cane, I don‟t know how much you can see but can I assist you in any way‟ In my experience people are keen to try out a new skill. I was a patient in Ophthalmology recently. When I arrived in the clinic a member of the team came up to me and asked me if I would like assistance. She knew how to guide me and guided me to a chair with arms. I said, „ you are very good at this, have you had any training?‟ At that point she recognised me and said, „yes and it‟s you, you were the trainer! She went on to tell me that the training had made such a difference and she

now felt much more confident working with patients with sight loss.

I gave Huw the opportunity to ask a question. This is Huw‟s question: „How will Health Boards know that the experience of patients with sensory loss is better for the training‟. I should have said easy questions only! Health Boards are investing in training and if it doesn‟t improve the patient‟s experience, it will be a waste of their time and money. Huw is convinced that training makes a difference. He is also convinced that health organisations across Wales should both measure and publish their successes to be assured of the quality of return on their investment.

„I just called‟

Martin Griffiths talks to us about his experience

of using the Next Generation Text (NGT) Service It‟s name may sound like something out of Star Trek but

Next Generation Text (NGT) Relay is modern communication technology that is available to anyone to use with a compatible device that has internet and phone connections such as a smartphone. Launched over a year ago by British Telecom, NGT enables anyone who has hearing loss to use their smartphone, tablet or computer to make phone calls from almost anywhere to anyone. The person with hearing loss can choose to type or speak their message to the person they are calling and receive the replies via text on a screen. NGT has just won a „Disability-Smart Award‟ at the Business Disability Forum in London.

Martin Griffiths, Hear to Meet Co-ordinator for Action on Hearing Loss Cymru is one of NGT‟s biggest fans.

As a deaf person Martin could not use his smartphone to make phone calls and had to rely on using SMS texts which are fine if you don‟t need an immediate response but many organisations including GP surgeries and hospitals are not equipped to receive and respond to text messages. The old text relay system also wasn‟t mobile which meant that Martin had to be at home or at work to use his static Textphone which was connected to a landline.

Deaf people may prefer to use text or email but downloading the free NGT Lite App gives them the choice to make telephone calls. Martin is now able to call his GP surgery or the hospital from anywhere with an internet connection and on one occasion he rang his surgery from Caerphilly library. His surgery or hospital is also able to return his call because the NGT number is in the same format as a mobile phone number. Previously, Martin explained that the old text relay system used a 5 digit prefix number starting with an „1‟ which some hospitals and surgeries are unable to use or the phone number with the prefix was too long for the surgery to record in their data field. There is still a third party involved in the NGT service and some people don‟t like the idea of a stranger being part of their conversation. However, for those who do not want a third party involved, there is the Pedius App which works with voice recognition.

„I couldn‟t contact people when I was out and about. It‟s no fun when standing in the pouring rain in my hometown of Caerphilly trying to get a hearing stranger to phone a taxi for me. Having NGT has been empowering, it has given me a new lease of life as I can do normal things when I am out like ring for a taxi‟.

Another benefit of using NGT is that it offers more of a two way conversation. The old system would only allow one person to speak at any time and you could not respond until the other

person had finished talking. With NGT, it feels more like a natural conversation with both people being able to interrupt at any time. Martin has also found that the new system connects more quickly as he was used to having the phone put down on him including his surgery or the hospital when there was a longer delay with the connection. Another advantage for Martin as someone who is registered severely sight impaired is the option with NGT to change the size of the text and the colour contrasts.

Martin can also now use the free minutes for telephone calls he has always had as part of his mobile contract but was unable to use before. This means that using NGT does not cost any more money. He suggests anyone who is interested in registering with NGT should check to see if they have free minutes in their contract. Although the App has been out for over a year, there still seems to be a low level of awareness of what it can offer

people who find the telephone inaccessible. Martin suggests that there may be a reluctance to use it because people might think it is the same as the old system and not realise how much better it is. There may also be an issue for older people who do not use smartphones. However, Action on Hearing Loss Cymru has a project called „Online Today‟ which is supporting people with hearing loss to use the internet. This support could include helping people to register with NGT. For further details please contact Glenys Jones at Glenys.Jones@hearingloss.org.uk Being able to make telephone calls independently can be life changing. One person in their 80‟s who has been supported by the Online Today Project to learn about using the internet is now making calls using NGT after 20 years of not being able to do this. To find out how to register with NGT, please visit their website at http://ngts.org.uk/

The NHS Centre for Equality and Human Rights would like to thank everyone who has contributed to this newsletter.

The next edition will be published in June 2016 and we would welcome comments and contributions from any individual or organisation involved in work to deliver the All Wales Standards for Accessible Communication and Information for People with Sensory Loss. For more information about this newsletter and/or to submit an article for the next one, please contact Claire Sullivan – (01873) 732871 or email claire.sullivan@wales.nhs.uk

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