LDAG News
Winter 2013/2014
30 Years and Counting...
Inside this issue:
Easy Read Health Wales Update
3-4
North Wales Acute Liaison Service
4-6
Joe Powell, Director of All Wales People First
6-9
LD Minimum Data Set
10
Celebrating 30 years of the All Wales Strategy and the contribution of people with a learning disability within their communities in Wales. People from all over Wales with an interest in learning disabilities came together on 14 October 2013 at the Vale Resort on the old Hensol Hospital site to celebrate 30 years of the All Wales Strategy. Jointly funded by the Learning Disability Advisory Group, Mencap Cymru and All Wales People First with additional organisational support from Learning Disability Wales and All Wales Forum of Parents and Carers, this event marked an important milestone in the history of people with a learning disability living in Wales. History Back in 1983, the Welsh Office published the “All Wales Strategy for the Development of Services for Mentally Handicapped People”. According to “Fulfilling the Promises”, a subsequent report to Welsh Government by the original Learning Disability Advisory Group in 2001, the aim of the All Wales Strategy was to: “enable people with learning disabilities to enjoy the full range of life opportunities and choices, to have positive identities and roles in their families and communities, to exercise choice and to develop independence, self-respect and self-fulfilment. It established the rights of people with learning disabilities to normal patterns of life within the community, to be treated as individuals, and to receive additional help and support from the communities in which they live and from professional services in developing their maximum potential.” (Continued on page 2)
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This ground-breaking document was the catalyst for people with a learning disability in Wales to begin moving out of long-stay hospitals and into the community. Celebration People with a learning disability, families and professionals were all invited to join the celebrations. LDAG co-Chairs Roger Banks and Sophie Hinksman jointly chaired the day and ensured that the agenda ran smoothly. Deputy Minister for Social Services, Gwenda Thomas, delivered a keynote speech outlining some of the significant changes over the last 30 years as well as looking to the future with the Social Services and Wellbeing (Wales) Bill. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
Cardiff People First shared a powerful presentation based on their Ely Hospital Project that offered an insight into what life had really been like in Ely Hospital. Pauline Young, chair of All Wales Forum of Parents and Carers, shared some of her own personal experiences as a parent of a son with a learning disability and delegates were given the opportunity to share their own stories throughout the day. Information and discussion There were also group discussions on various aspects of community life including employment, transition, hate crime and campaigning. These facilitated discussions provided an opportunity to share positive experiences, raise concerns and suggest solutions. The feedback from each group will be collated into a report for the Learning Disability Advisory
Group to consider and will help shape the group’s future work. Throughout the day, delegates were able to browse the ‘market place’ where various organisations offered information about their services including Barod, a community interest company employing an equal mix of disabled and non-disabled people, and Safer Vale Partnership, a South Wales Police initiative to reduce crime and the fear of crime in the Vale of Glamorgan. Evening The celebrations continued into the evening with a three-course meal and disco. Jane Hutt, AM for the Vale and Minister for Finance, welcomed delegates to her constituency and talked about her personal experience of the Nimrod project where it all began. The Nimrod project, which piloted multi-agency, community-based teams, began in 1981 and by 1986 it was supporting 150 people with a learning disability in Welsh communities. As Jane said, “If you believe in something, you’ve just got to get on and do it” and that is exactly what Nimrod was about. The All Wales Strategy was launched in 1983 as a direct result of the project and (Continued on page 3)
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saw the implementation of the Nimrod principles on a national scale. She also talked about the growth of the People First movement in Wales over the last 30 years and her continued involvement in the work of Vale People First as a trustee. Looking to the future, Jane went on to talk about the Independent Living Framework, describing it as being “as
Page 3 important as the Social Services and Well-being Bill”. This event was a wonderful opportunity to look back at the last 30 years but also to think about where we are now and where we want to be in 30 years’ time. In the words of Jane Hutt AM: “We must never be complacent and think we’ve got it all right”.
Easy Read Health Wales Update Developed as a result of the previous Learning Disability Implementation Advisory Group’s recommendations, Easy Read Health Wales is a website designed to enable people with a learning disability and their families/ carers in Wales to find accessible information about health and wellbeing. The website brings together Easy Read documents on a wide range of healthrelated topics from having a blood test to preventing constipation. The site is bilingual and each main page includes a video to support the text and make it more accessible for those who may have difficulty reading. Anyone who would like support to find or understand information on the website can phone the helpline on 0808 808 1111. Easy Read Health Wales is funded by Welsh Government and was developed as part of the Learning Disability Awareness Training and Accessible Information Project. Learning Disability Wales, All Wales Forum of Parents and Carers, Mencap Cymru and All Wales People First worked in partnership on the project and each contributed to the development of the website. The
“To catch the reader's attention, place an interesting sentence or quote from the story here.”
project ended on 31 March 2013 but thanks to additional funding from Welsh Government, Samantha Williams is continuing to maintain and promote the website as part of her role as LDAG Information Officer. Access to good quality information in a format that people can understand is an essential part of enabling people with a learning disability to lead healthy lives. There has been significant evidence in recent years of the health inequalities faced by people with a learning disability. Lack of reasonable adjustments in healthcare provision has been identified as a major contributory factor to this problem and providing accessible information is one type of (Continued on page 4)
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reasonable adjustment that could make a significant difference. A sub-group of LDAG is looking at the issue of health inequalities and social determinants of health and will report back to the group on a regular basis. If you haven’t done so already, please have a look at the website www.easyreadhealthwales.org.uk and
LDAG News let us know what you think. We want to make sure that as many people as possible know about the website so please promote it to your networks, colleagues, friends, patients etc. If you would like some flyers and cards to help promote Easy Read Health Wales, or you have some Easy Read documents you would like to add to the website, please contact Samantha Williams on 029 20681177 or email samantha.williams@ldw.org.uk.
North Wales Acute Liaison Service Dr Delia Wainwright, LD Nurse Programme Manager Betsi Cadwaladr University Health Board, came along to the fifth meeting of the LDAG in June to talk about a project undertaken in hospitals across North Wales. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
In response to concerns within acute hospital services about meeting the needs of patients with a learning disability, a pilot project was developed to provide specialist advice and support within the three main hospitals in North Wales: Ysbyty Gwynedd, Wrecsam Maelor and Ysbyty Glan Clwyd. The focus of the project was on improving access to hospital services for people with a learning disability and ensuring a more co-ordinated approach to service provision. Role of the Acute Liaison Nurse Experienced Learning Disability Liaison Nurses were seconded to the project in order to support people with a learning disability and their families going for treatment or requiring admission to hospital and throughout their journey from pre-admission planning (where appropriate) until discharged. They took on the role of Acute Liaison Nurses and
used their knowledge and skills to act as ‘clinical advocates’ for people with a learning disability. The aim of their work was to reduce inequalities and promote good communication processes through the creation of partnerships across hospital and community services. They supported patients to ensure the accuracy of health care delivery by working with key health professionals, community services, families and carers. The role also involved providing accessible information for patients and carers/families as well as training and advice for health staff. Initial findings During the first six months of the study, a total of 210 separate admission referral requests were made to the Acute Liaison Nurses across North Wales, the majority of which came via emergency admissions. Referrals to the project represented 0.31% of the total hospital admissions during the same period. Admission details were recorded on a spreadsheet held by the Acute Liaison Nurse who visited over the period of the patient’s stay until discharge. In some (Continued on page 5)
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cases, follow up in the community was also carried out for the purpose of feedback. The data showed that 20% of admissions required direct support. 23% of these patients relied on family members while 28% had paid carers in attendance during long periods of their hospital stay and only 10% of this support was funded by the hospital. Approximately 49% of patients with a learning disability either brought with them a ‘Traffic Light Passport’ or completed one during their stay in hospital. The Traffic Light Passport can be completed by the individual and/or with help from their carers, family members or support staff eg member of LD community team. It is not a substitute for a clinical assessment but provides a quick and easy way for hospital staff to find out key information about an individual and their needs. The passport can act as a vital tool for carers and medical staff when trying to establish what reasonable adjustments may be required and how best to communicate with and support the patient with a learning disability.
“To catch the reader's attention, place an interesting sentence or
Hospital staff having a better understanding of the needs of people with a learning disability and feeling more confident in supporting them. Community services having a better understanding of the difficulties faced by acute and primary care staff. Improved joint working between acute, primary and learning disability services. Ongoing developments of joint care pathways and policies to reflect the
quote from the story here.”
Recommendations
Benefits
needs of people with a learning disability. Patients and carers/families feeling less anxious about planned hospital admissions and better supported during their time in hospital.
Hospital care requires a more flexible approach. Alerts on computer system in Accident and Emergency departments to flag up patients with a learning disability. Better information on admission with regards to patients who have a learning disability. Employment of Acute Liaison Nurse. Involvement of Acute Liaison Nurse in early stages of admission process. Information for people with a learning disability should be available in a range of accessible formats. Use of hospital ‘Traffic Light Passport’. Development of ward based resources. Discharge planning should always commence as early as possible. (Continued on page 6)
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Training and education strategy for all hospital staff. Pre-appointment and pre-admission processes agreed. Recognition that families and carers (both paid and unpaid) play a significant role in the provision of hospital care. Working alongside families and carers.
Development of e-Learning module on supporting people with a learning disability in hospital setting. Work with patient experience groups to produce a self-assessment tool for Clinical Programme Groups to assess their position, identify gaps and promote ownership for improvements and focus groups with service users and carers.
A Director with a learning disability? Surely not! “To catch the reader's attention, place an interesting sentence or
Joe Powell, Director of All Wales People First and member of LDAG, talks frankly about his role and how the organisation went about appointing a Director with a learning disability. quote from the story here.”
When All Wales People First advertised to appoint a person with a learning disability as its Director, there was a lot of excitement amongst the learning disability community. However, my colleagues Yvonne Boxall and John Pearse were told by a number of senior professionals that this appointment “could never succeed” and that they did not know “a single person with a learning disability who could hold down this position”. What did I think about this? Did I think a person with a learning disability could hold down this post? Did I think I could be that person? The honest answer was that I really didn’t know. Sounds a bit negative, doesn’t it? But let me explain. Realism vs idealism I have always preached that it is vital within the learning disability world to
aim for realism and not idealism. Whilst the ideal may be that all learning disability organisations are run by people with a learning disability, we must be very careful not to try to achieve this simply because it is an ideal, or because we want to be seen to be ‘politically correct’. In my opinion, idealism can lead to tokenism where we have to keep making excuses for people in order to make it look like they are succeeding or, even worse, setting people up for failure by putting them in roles that they simply are not able to cope with. I feel that when appointing a person with a learning disability as Director, All Wales People First were very conscious of these issues and while the National Council were confident that this could be achieved, I would argue that in reality nobody could
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Joe Powell aged 2
Page 7 campaigner on both autism and the personalisation agenda, I considered myself to be someone who was linked in with the most advanced thinkers in the system. But not even they had tried something like this before. When I was first appointed as Director, my initial concern was that there may be resentment from some groups that someone from outside the People First community had been appointed. However, I have to say that everyone has been very supportive towards me and this has made settling into my new job considerably easier. And to think that a week before the deadline I had told my Dad and life coach that I wasn’t going to submit my application after all! I had spent nearly three days writing my application so why did I almost withdraw? “To catch the reader's attention, place an interesting sentence or
ever have known (including me) until somebody tried it. The key point was that it wasn’t about whether the organisation succeeded or failed, but the fact that it had the courage to try. I myself had never been a Director, neither had any of the other candidates who applied for the role, so who knew what was going to happen? But it has been an adventure and a steep learning curve for both me and All Wales People First. We have learned and braved this together. Yvonne, John and our board of Directors were keen to support me in whatever way possible to make things work and I was determined to reward their faith in giving a person with a learning disability this amazing opportunity. Applying for the job When I first read the advertisement for the Director’s role I was incredibly impressed that an organisation was prepared to give somebody this opportunity. As someone with a lot of experience as a public speaker and
quote from the story here.”
It wasn’t because I thought a person with a learning disability couldn’t do it or that I couldn’t be that person. The real reason was because my lack of life experience, low self-esteem and the fact that the one job I’d had in my 20s was a disaster, meant that I could not imagine myself succeeding in the workplace. I had a false perception of working life and because I had resigned myself to a lifetime of doing courses and being on benefits, I had never imagined such an opportunity would be possible. Ironically, I was already working as many hours as the Director would be required to work and doing most of the things in the job description, but for different organisations and in a fragmented way. I asked Richard Mills from Research Autism and the National Autistic Society for his opinion and (Continued on page 8)
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whether he would be my referee. He told me that he had absolutely no doubt that I could do this job but that I would only succeed with the right support. He said this wasn’t due to my disability or because he lacked faith in me, but because any Director of any organisation needed this to succeed, whoever they were. The process Joe talking to one of the members at Vale In fact, a well thought out People First strategy was already in place, designed and established a long time before I was in post. The process and I were also aware that Yvonne began at Caerphilly People First where Boxall had considerable People First applications were reviewed and knowledge and experience that we candidates were selected for simply didn’t have and the interview. Consideration had also management team would suffer been given to how the new without her input. We therefore management structure should look. It pushed for Yvonne to join us as an was originally envisaged that the equal member of the management Director would work on a probationary team, each with 33% managerial period for nine months, working for control. We were able to tweak our two days per week and would be budget to make this happen and this mentored by Yvonne Boxall. If the has proved to be a winning formula. candidate passed their probationary Whilst John is a very experienced period they would then by confirmed Business Manager and I am able to in post, work three days per week and bring a personal perspective to our would have a Personal Assistant to management team, we both realised support them in their role. The that Yvonne’s knowledge was vital in Director would share 50% managerial making key managerial decisions and control with the Business Manager that we couldn’t gain her vast John Pearse, and Yvonne Boxall would experience in the short time we had become the National Council worker. both been with the organisation. The “To catch the reader's attention, place an interesting sentence or quote from the story here.”
However, it soon became apparent that I wouldn’t need a Personal Assistant and that the full nine months probationary period wouldn’t be necessary. Within six months I passed my probationary period and was confirmed in post. John Pearse
staff and members of our People First groups were delighted to hear this too. Yvonne Boxall has made a massive impact in the time she has been employed by All Wales People First and has been the Director, Business Manager, National Council
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worker, administrative support and just about everything else to this organisation for many years. Every day I am with Yvonne I learn from her and it will realistically take me several years to gain the experience that she has in this field.
The All Wales People First National Council
The reality I have learned a lot since starting my role on 9 October 2012, and I am more than aware that there is still an awful lot to learn. One of the things I am learning all the time is that there are still many things I am simply not aware of. It is by picking up on this and taking the time to develop my knowledge and skills that I hope to improve in my role. This will of course take time. What I learned from my time in the social care service is the importance of being approachable and serving those who pay my wages. In my experience, senior managers rarely ever did this.
I have loved every minute as the Director of All Wales People First. I love travelling to meet our members and staff, and feel really proud to say that I am representing an organisation I believe in. But most of all it is wonderful to be representing our members across Wales and articulate their needs and concerns. My own story has been beneficial in explaining the need for political change and the loopholes in an unjust and often poorly regulated care system but that is now in the past. Apart from helping to raise awareness of the abuses that can happen within the care system, my own past difficulties are irrelevant. But what is not acceptable is that generations of people with a learning disability and their families are still suffering in the way my generation and those previously did. This is why I am proud to be a member of the Learning Disability Advisory Group. It is a privilege to work alongside so many others with the integrity to try to improve the quality of life for people with a learning disability and their families across Wales.
Joe speaking at a Research Autism event in England
“To catch the reader's attention, place an interesting sentence or quote from the story here.�
Joe Powell, Director of All Wales People First
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LDAG News
LD Minimum Data Set Back in 2009, Deputy Minister for Social Services Gwenda Thomas approved the development of a minimum data set for learning disabilities in Wales in response to a request by the previous Learning Disability Implementation Advisory Group (LDIAG). It had long been argued that a lack of sufficient local and national data made the future planning and commissioning of services for people with a learning disability in Wales very difficult. The LD minimum data set was developed by the Data Unit Wales using information provided by local authorities and funded by Welsh Government. The data was available on the InfoBaseCymru website in a variety of formats under the following headings: Placements of persons with learning disabilities Service provision to clients with learning disabilities Social Services revenue data (adults aged under 65 with learning disabilities) Children and young people with learning disabilities.
Unfortunately, the initial funding for the data set finished some time ago and given the fact that only a relatively small number of people accessed the data, the Data Unit Wales decided not to collate the information for 2012/13 and removed the data set from the website in October this year.
Samantha Williams, LDAG Information Officer, recently met with representatives from the Data Unit Wales to discuss the importance of the LD minimum data set and the possibility of reinstating it on the website. Sam explained that one of the reasons so few people accessed the data is simply because most are unaware that the data exists. In the past, she has directed people to the data set when they have contacted her with a query (often when putting together funding bids) and they have always been surprised to discover its existence. The Data Unit Wales agreed to re-instate the data set for the previous year (April 2011-March 2012) to allow people to see the types of data available and decide whether or not they find it useful. Sam will raise this issue at a future LDAG meeting and feedback to the Data Unit Wales. Please have a look at the data set here: http:// www.infobasecymru.net/ IAS/themes/learningdisabilities(adults) minimumdataset and let Sam know what information you find useful and whether or not you would prefer the data in a different format eg as a local authority overview report rather than tables and maps. You can contact Sam on 029 20681177 or email samantha.williams@ldw.org.uk to let her know your thoughts.
For more information or to let us know what you think, contact Sam Williams on 029 20681160 or e-mail: samantha.williams@ldw.org.uk Follow us on Facebook and Twitter @LDAdvisoryGroup