University of Wolverhampton BNurs Learning Disability Nursing student Laura Creswell recently spent a week with Dudley Voices for Change during Learning Disability Awareness Week and has published a blog post about her time there on the Learning Disability Nurse website.
You can read more about her experiences below:
I was part of a group of three student learning disability nurses from the University of Wolverhampton who spent one week with Dudley Voices for Choice, self-advocacy team. Dudley Voices for Choice (DVC) are a charitable organisation that supports people with a learning disability and autism to speak up for themselves. The planning team was made up of support staff, trustees, and the management team/members of DVC. This is my reflection on the week.
DVC delivers training to the local area, to businesses and hospitals; the training is delivered by people with a learning disability. Campaigns such as ‘call me by my name’ aims to prevent people with a learning disability being labelled (DVC, 2015). This not only educates the public about learning disabilities but it gives the trainers confidence to talk and be heard.
19th – 25th June 2017 was leaning disability awareness week, the focus this year was employment. People with a learning disability do not have equal opportunities and there are appallingly low levels of employment. Figures show that 2 in 10 people with a mild or moderate learning disability are in employment and this can be voluntary and unpaid work. (Mencap, 2017).
Monday - Monday was an employment event. This was a chance for people to share their experiences of trying to seek employment in the area. The talk was presented by the experts themselves. The audience was made up of representatives from the job centre, job coaches, tutors, psychologists and nurses. Employing someone with a learning disability has huge benefits for companies which was shown by a company called ‘Lunch on the Run’, who promote the employment of people with a learning disability. It not only gives work experience but showcases what can be achieve with the right support. The food was prepared by lunch on the run for the employment event. People were very complimentary and some people were even shocked- the food was stunning! If people looked past the disability they would see a range of skills that are vital to our workforce.
When interviewed, people with a learning disability said they liked cooking, cleaning, working in administration roles, caring for people and much more. These skills are used in lots of different roles, the aim was to highlight to employers they are missing opportunities to recruit potential employees. Looking around the room you could see how shocked people were by this, showing the lack of education about one of the most vulnerable groups in our society (Mencap, 2017). When the audience was asked what a learning disability was compared to a difficulty, most groups could not answer.
Transforming Care presentation. NHS England published on 20th June 2017 that there will be a £10 million-pound investment for people with a Learning Disability to lead more independent lives (NHS England 2017). This is part of the transforming care program (TCP) where £40 million has been invested. On average each month, 240 people have care treatment reviews. These reviews seek to make the individual more independent looking at the whole person, it aims to bring people back into their home communities and receive care from home.
TCP’s aim to reduce unnecessary hospital admissions by offering the right care in the right place. 24,000 people with a learning disability or autism are at risk of being admitted and there has been a 13% fall in inpatients already since 2015 (NHS England 2017). I was working with the team for this talk to educate local care providers that transforming care will affect them. The experts themselves presented the talk to the group. I was working closely with two members of the management team; they told us that their role and the training they do gives people with their needs a voice and to speak up for themselves (DVC, 2015). Seven people from different organisations came to the talk, I was informed by staff at DVC that fifty personal invites were sent out, it was advertised at Carers Week, Eventbrite, Carers groups, Halesowen and Dudley News and on Black Country radio. The replies from the non-attendants and parents of people with learning disabilities, was that the talk would not apply to them. If NHS England are making this change nationally how could it not? If anything, it emphasises people’s avoidance of change.
In our area Staffordshire and Shropshire, 312 TCP schemes have been approved (NHS England,2017). NHS Shropshire clinical commissioning group have highlighted possible problems with transforming care plans, Shropshire does not have any secure community based premises for people with a learning disability through the NHS. There is only one independent provider that provides services for Autism. Shropshire is currently waiting on approval of TCPs to build premises for 12 people (NHS Shropshire, 2017). I find this worrying as I have had a post in the Special Educational Needs Department of a local Secondary School where their team is excellent they support children with learning disabilities and difficulties through transition fazes in their life. This makes me question what support do these children have when the leave school? Evidence like this shows how people can get lost in the system and to authorities. It also highlights NHS England’s timescale doesn’t seem feasible and local authorities cannot meet the plans in time.
Professor Mansell in 2010 revised the government plans and he had spent decades campaigning for the closure of institutions, he campaigned for advocacy services for people with a learning disability and funding for new care plans. In his report that was revised in 2007 he called for service users to receive local care and housing (Duffin 2012). This really highlights the work the Dudley Voices for Choice self-advocacy team do in trying to educate people about Learning Disabilities and give people a voice- even though sometimes it feels like hitting your head against a brick wall.
Values behind transforming care plans are good and need to happen but whether they can be met in the five years is an issue due to lack of education, time constraints and funding. Funding each year to support this will be a problem, since the banking crisis of 2008 local authorities have felt the financial constraints and there were massive cuts to health and social care (Ham, Dixon and Brooke, 2012). The Better Care Fund seeks to join health and social care providers in implementing transforming care program spending 5.128 billion 2017/18 this will increase to 5.617 billion 2018/19 (Department of Health, 2017). These are huge figures, but it is hard to see the impact on smaller organisations or services, as of yet only time will tell. Jackie Fletcher writing for care management matters and moving people from assessment treatment units, states that funding tends to go towards crisis’s, the system waits for a crisis before it acts and there is nothing in place to act quickly (Fletcher, 2017).
Wednesday - Sharing event at University of Wolverhampton. This event was to educate nurses on getting it right when people with a Learning Disability access hospitals and need help in the community. People with a learning disability were interviewed and videoed at the University, this is a plan to transform the education of nurses in accordance to the transforming care scheme.
There is no better way to be educated about Learning Disabilities then from the people that were born with the condition (DVC, 2015). No individual is the same this applies to Learning Disabilities just the same. People who took part were asked about their past experiences and a lot of the questions were focused on their experiences in employment, emphasising on the key issue for Learning Disability week this year. Life stories are a key part to practice it gives us insight and understanding on their values and choices and on how someone with a Learning Disability perceives the social world (Talbot, Astbury and Mason, 2010). Some of the stories revealed shocking truths for example a week’s work in a factory they were paid a total of £3. The saddest part of the story is that the lady liked the job which they now do not have due to redundancy, the role gave her value and meaning which she spoke about in her interview. It is clear that vulnerable people in our community can easily be taken advantage of; in this case there was financial abuse. Only 6% of people who have a Learning Disability are in paid employment (Mencap, 2017) this 6%-6.4% have a moderate to severe learning disability compared to people with a physical disability 47.4% are in employment (BILD, 2011).
The life stories also showed that these are people with the same aspirations and dreams as everyone else, they were proud to talk about relationships, family and spouses. One lady exhibited her craft work and the different techniques she had learnt at the local arts and crafts group. Another lady told the interviewers how she had worked at a local hospital in an administrator’s role and would like to have more hours as her and her fiancé are saving for their first home.
Thursday - The final day of learning disability nursing was the big event the production Shine.
Shine focuses on the achievements of people with a Learning Disability and not the belittling views and discrimination they face (Talbot, Astbury and Mason, 2010). A production that was organised by the DVC to raise awareness and celebrate the talents of people with a learning disability. The show was extremely moving for a number of reasons with people getting quite tearful, lots of laughter and very thought provoking. The night was packed full of drama, poetry, dance and singing, with the finale of everyone on stage singing to Take That’s Shine, there was a great sense of feeling united together. It was a privilege to work alongside the stars of the show.
From this experience, it highlights the important fact that how can you give good person-centred care if you do not understand the person you’re caring for. Many people with a Learning Disability need support from all areas and different professionals so they can access the services they need. It is a fact people with a learning disability have been let down by the system, cases like Winterbourne view 2011 horrifyingly put this forward.
Through self-advocacy groups people with a learning disability have felt the courage to come forward, the act of telling their own stories is a reaction and self-advocacy against the dehumanising view that people with a learning disability are helpless victims (Goodley 2000) in fact they want love, jobs, experiences and to learn new skills like everyone else. These wonderful people are extremely strong and show courage to fight for their basic human rights. If anything, we can learn from them!
Laura Cresswell – 1st year Learning Disability Student Nurse.
BILD (2011) Factsheet: Learning Disabilities [Accessed 24 June 2017]. Available at: file:///C:/Users/laura/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Learning_Disabilities_11.pdf
Department of Health (2017) 2017-19 Integration and Better Care Fund [Accessed 28 June 2017] Available at: <https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/607754/Integration_and_BCF_policy_framework_2017-19.pdf>
Dudley Voices for Choice (2015) Our Team [Accessed 28 June 2017] Available at: <http://dudleyvoicesforchoice.org.uk/the-team/>
Duffin, C. (2012) Campaigner on disability care transformed people's lives. Learning Disability Practice (through 2013) , 15(5), pp. 8 .
Fletcher, J. (2017) Making Transforming Care Work Experiences of moving people out of assessment and treatment units [Blog] [Accessed 29 June 2017] Available at: <https://www.caremanagementmatters.co.uk/feature/making-transforming-care-work/>
Goodley, D. (2000) Self Advocacy in the lives of people with a learning disabilities: Buckingham. Open university press.
Halstead, J. (2012) Transforming nursing education to meet the needs of the new transforming care scheme [Blog entry] [Accessed 28 June 2017]. Available at: < http://www.rwjf.org/en/culture-of-health/2012/09/transforming_nursing.html>
Mencap (2017) Learning Disability Week 2017 [Accessed 28 June 2017]. Available at: <https://www.mencap.org.uk/get-involved/learning-disability-week-2017>
NHS England (2017) NHS England to invest in building the right support for people with a learning disability [Accessed 26 June 2017]. Available at:< https://www.england.nhs.uk/2017/06/nhs-england-to-invest-in-building-the-right-support-for-people-with-a-learning-disability/>
NHS Shropshire Clinical Commissioning Group (2017) Shropshire Transforming Care Partnership Footprint Transforming Care Partnership (TCP) [Accessed 28 June 2017] Available at: <http://www.shropshireccg.nhs.uk/?page=shropshire-tcp-footprint-&ppvw=bcc059a5dcc7a40de3126e66719cf840>
Talbot, P. Astbury, G. and Mason, T. (2010) Key Concepts in Learning Disabilities [Online] Sage. [Accessed 25 June 2017]. Available at: https://books.google.co.uk/books?id=fQzTGB72jdIC&dq=learning+disabilities+life+stories&source=gbs_navlinks_s