Learning Disability Week 2018!
Yesterday I was privileged to attend an event celebrating learning diability champions hosted by the Paul Ridd Foundation and Mencap Cymru, in the Marriot Hotel Cardiff. Paul’s siblings, Jayne Nicholls and Jonathon Ridd have recently been awarded the British Empire Medal for their tireless lobbying and awareness raising after the premature and avoible death of their much loved brother Paul in January 2009.
The introduction of learning disability champions across two hospitals in ABMU health board has now been taken up in other health boards in Wales, and each one was represented today. The care bundle, which has a range of essential tools such as the hospital passport, pathway, risk assessment, communication aides and Paul’s story is available online www.paulriddfoundation.org this is a freely available resource which can vastly improve health outcomes for people with learning disabilities admitted to hospital.
A wide range of people were in attendance, including people with learning disabilities, their supporters (both paid and unpaid) academics, liaison nurses, adult nurses, children’s nurses, and highly skilled support staff. There was a variety of presentations including Vaughan Gething, Cabinet Secretary for Health and Social Care; Jean White, Chief Nursing Officer (Wales) as well as Melanie Davies (RCNi nurse of the year 2017), Sister on the ward where Paul died. The event felt truly collaborative with charities, government, universities and health boards represented, but most importantly people with learning disabilities were included throughout, Sian did a great job co-hosting.
The presentations were powerful and inspiring, a mother Helen Vaughan, reflected on her son Daniel’s experiences both good and bad and described how hospital admissions have evolved over time to meet his needs and provide positive experiences to him and his family wherever possible. The stories shared by professionals of making a person’s care journey as smooth and supportive as possible were inspiring, emotional and joyful. Dr Rhidian Jones, Consultant Anaesthetist at Princess of Wales Hospital, talked about singing teletubbies in theatre and not being able to use a patient’s name, only calling him ‘mate’ for the duration of the interaction, see the spa for more information. Sister Cath Thomas talked about sewing a button tighter to avoid someone being able to pick at their sutures post op, removing bollards in car parks so that a family members car could be driven as close to the entrance as possible for their appointment, telephone consultations to gather preadmission data to avoid unnecessary waiting and speed up the process. Claire Johnson reflected on the reasonable adjustments she had used in practice, including dressing a bear in a hospital gown and ted stockings to support a 51 year old lady to be calm and reduce anxiety pre and post operatively.
As learning disability nurses we are privileged every day to work with people with learning disabilities and their families, often when they are at their most vulnerable. The passion in the room where NHS staff representing a range of roles, professions and settings discussed their passion and desire to champion the rights of people with learning disabilities was overwhelming. One person told me if he had his time again, he would retrain as a learning disability nurse! However, there are some barriers to implementation and as always time was highlighted throughout, time to read the passport, time to attend the training, time to spend with the person. The attitude or values of some other health professionals who may not be aware of the legal requirement that they make reasonable adjustments or may not have the experience or inclination to want to support people with learning disabilities to access health was clearly a barrier in some situations, as well as task orientated rather than person centred care.
There has clearly been cultural changes in the hospital where Paul Ridd died, but we know there is still a long way to go, people with learning disabilities continue to die premature and avoidable deaths. Sharing our skills, supporting each other, valuing the work we do and including the person and their families throughout needs to be maintained. In keeping this going, a learning disability champions network, family learning disability champions, more liaison nurses, positive stories, momentum and passion were some of the suggestions made today, but really treating all people with dignity, respect and the way that you would want to be treated lies at the heart of getting it right.
We were asked today how we could maintain the work of liaison nurses and learning disability champions, do we need mandatory training on people with learning disabilities for all staff working in the NHS? I believe from talking to colleagues in the room delivering this in practice, that the well known phrase ’if we get it right for people with learning disabilities we get in right for everyone’ rang throughout the day. Maybe one day we won’t need the passports, the champions and liaison nurses or the campaigns because making people feel safe, supported and valued in receipt of their health care should not be a reasonable adjustment, it should be a right.
In memory of Paul Ridd and in celebration of everyone who wants to make our services better for the people we support.
Paula Hopes, RNLD & Senior Lecturer, University of South Wales