Whilst I am not a Learning Disabilities Nurse, I have had the privilege to care for many children and young adults throughout my career who have learning disabilities. One the highlights of my post registration RSCN training at Great Ormond Street was spending an elective placement with an organisation called ‘Kith and Kids’ https://clarahost.clara.net/www.kithandkids.org.uk/ I’d seen an advertisement in the Evening Standard seeking volunteers to support one of their residential holidays. I got in touch and as a result had one of the richest learning experiences I could have ever wished for. Young people with learning disabilities and a number of similarly aged volunteers had a week of fun activities in the fresh air in Kent enjoying campfires and lots of shrieking on zip wires together! The week reminded me of a similar camp I’d done as a Red Cross cadet helping out on a ‘disabled children’s holiday’ in Margam Park way back in 1982. At both of these events the diagnosis of those participating wasn’t the focus, it was all about fun and helping each other out along the way.
Both of these events confirmed how much we all contribute to each other in creating fulfilling happy lives, so I’m sure I’m not alone in feeling sick at the findings of reports published last week relating to the care of children, young people and adults and the care they receive when they have learning disabilities/Autism. Whilst I know there is much outstanding care across the country, frustratingly there is also poor and unacceptable care, calling this out is vital if change is to happen.
The RCPCH and us team launched their ‘Hidden Health’ film at their conference this year, https://youtu.be/F91tA0VXCGM it’s a reminder that so often the health needs of those who are most vulnerable go unrecognised. Listening attentively to hear people’s voices so that every opportunity is given for active participation in life as well as in care, seems an absolute ‘must do’ that we definitely haven’t consistently cracked yet.
So on reading these reports, discussing findings, I’ve been asking myself ‘what next, what can I do?’
Having an increased awareness of the risks faced by people with a learning disability is needed for all health professionals. NHS England flags that the major killer conditions for this client group include: Pneumonia; Respiratory; Constipation; Sepsis and deterioration; and Cancer https://www.england.nhs.uk/2019/05/nhs-invests-5-million-to-improve-care-for-people-with-a-learning-disability. Increasing use of hospital passports can help in addressing some of the challenges of understanding what’s ‘normal’ for individuals who may require support in communication. There was a fantastic piece of work by Young People who created a campaign with Ambitious about Autism on exactly this, encouraging people to be able to provide early warning flags when stuff deviates from the norm for them https://www.ambitiousaboutautism.org.uk/know-your-normal
The LeDer report published last week https://www.hqip.org.uk/resource/the-learning-disabilities-mortality-review-annual-report-2018/ is worth reading and a summary of recommendations can be found here http://www.bristol.ac.uk/media-library/sites/policybristol/PolicyBristol-PolicyBriefing73-May2019%20LeDeR.pdf This short film offers an excellent overview of the LeDer process and the vital input from families
Chapter six specifically discusses on the deaths of children with learning disabilities.
The LeDer report highlights that children & young people from BAME groups were overrepresented in deaths of people with learning disabilities’ and asks us to focus on addressing any unconscious bias that may exist. I think we’ve got much more awareness to raise on the experiences of children from minority ethnic groups.
They were also able to draw out elements of good practice relating to the care of children and young people and areas where we could do better:
The report by @CareQualityComm on care of children & young people with complex behavioural needs, restraint & segregation, https://www.cqc.org.uk/sites/default/files/20190521b_rssinterimreport_full.pdf was also published, they explored..
The review summarises the pathway that leads to segregation, offering insight for action.
The report highlights the importance of a trained compassionate workforce staff who are supported in caring for people with very complex needs. Surely this is why we need to increase and grow the learning disability nursing workforce, as well as expanding all of our knowledge of caring for people with learning disabilities?
One thing that Anne Corbet @AnneCorbett12 a hugely experienced Occupational Therapist champions is that much earlier intervention and support when behaviour challenges emerge at an early age is critical, BUT we don’t have the workforce or adequate systems in place consistently for this to happen currently.
The wonderful Dr Karen Horridge @KarenHorridge has led the implementation of strong effective data collection in community paediatrics and established ‘Disability Matters’ https://www.disabilitymatters.org.uk/ in collaboration with a range of organisations. Karen’s work offers us clear direction on the importance of understanding the issues, training the workforce and commissioning services to meet need.
A key organisation to follow is @BACD_tweets too.
So my go to people on twitter include:
Jim Blair @jimgblair
Mary Busk @marybusk
Kate Oulton @DrKateOulton
Yvonne Newbold @YvonneNewbold
Prof Ruth Nortway @NorthwayRuth
Tricia Handley @Triciahandley
All are accessible and champion effectively and passionately for better care for all who have learning disabilities.
So let’s read the reports, keep raising our voices, asking ‘why’ and support action to improve lives for all, those residentials many years ago brought so many happy memories… everyone deserves a happy fulfilling life… we can do better ….