Treat Me Right! – 10 years on…

10 years ago, Certitude together with people who have learning disabilities, their families, medical professionals and commissioners came up with Treat Me Right!

Marianne Selby-Boothroyd

It was a project created to deliver awareness training to health professionals about the support needs of people with learning disabilities and autism when using primary healthcare services. The training included simple reasonable adjustments medical staff could feel confident using to ensure people were able to access and receive good healthcare. This was training with a difference – it was delivered by people who knew first hand what good and poor support looks like – because they themselves had experienced it!

The project started in just one hospital and quickly extended to local GPs, dentists, opticians, midwives and then further still to university health and social care students. “About Me” Health Passports were created, training on putting together a good health action plan and understanding what reasonable adjustments could be asked was provided to people, their families and support providers. Again, all delivered by people who have learning disabilities or autism.

The project has made a huge difference, in the last year alone, the Treat Me Right! team trained nearly 1000 healthcare staff across 8 hospitals in 6 trusts across North West London. The range of healthcare staff trained has been impressive – and vital:

Feedback has time and time again shown it’s value in challenging perceptions of people with learning disabilities, increasing awareness of peoples rights and how to improve support.

“Better therapeutic understanding. Better care. Better outcomes. Better life.” – Member of mental health team

“I will keep an eye out for people with learning disabilities and try and develop a relationship.” – Nurse

“I will always consider if autism might be an explanation for particular behaviours.” – Member of psychiatric team

“This was such an inspiring and moving session. Your explanation of how ASD feels like glasses (when you didn’t know you needed them) example was brilliant. I only wish we could have had more time. Thank you.” – Member of psychology team

“I hope these changes will allow us to provide a better experience for our learning disability patients and to ensure that they receive the same quality of care as everyone else.” – Nurse

“It has helped me to understand adjustments I can make to provide a better hospital experience to patients with learning disabilities.” – Nurse

10 years before Treat Me Right! started, Certitude was supporting a brilliant man called William and I was the manager of his support team. Life could at times be really tough for William, he had a significant learning disability and autism, he didn’t use speech to communicate and was also deaf. At times, day to day life could be hugely anxiety provoking for him and we know we didn’t always get it right in helping him through this. During one of these times, he was prescribed anti psychotic medication to try and help. It didn’t and as he became more distressed, the doses would get higher. In the end he was admitted to hospital via A&E, clearly very unwell and agitated and was subsequently diagnosed with neuroleptic malignant syndrome.

In the first few days when we didn’t know if William would survive, one of the people that made it better was the sister of the ward he was admitted to. She made sure everything that could and should be done to help him, happened. I was even able to share his bed for the first couple of nights for him to feel calm enough to lie down!

I and the rest of Williams support team were listened to as we advocated for him – his views through us were never not respected or acted upon just because he had a learning disability and we too were treated with respect – as people who knew him well, liked and loved him and wanted the best for him.

Once William was out of danger, he had a long road to recovery – he had lost his swallow reflex which meant a whole host of invasive, frightening procedures. Everyone and I really do mean everyone pulled together to make sure he got the right treatment (Drs, nurses, psychiatrists, psychologists, speech and language therapists, dieticians, OTs, the local community team – the list seems endless) – again largely led by the ward sister. We never once heard “oh we can’t do this test, he’s too disabled”. William was valued and William was understood.

The ultimate outcome of him being able to return to his home was shared by us all (at the time, the idea of someone who needed a PEG because they couldn’t eat or drink being able to return home without nursing care was unheard of – so our local CQC inspector joined Williams band of supporters)- and it happened!

To this day, I am grateful and proud of the support that came together around William to help him get through a truly horrific time. At the time, it didn’t occur to me that this would be an exception to the rule, that not all people with learning disabilities and autism experience such committed, holistic joined up healthcare support simply because it is their right.

By the time we started Treat Me Right! I knew just how much of an exception Williams experience was. Coincidentally – it was with huge joy to find that one of the medical professionals involved in the setting up of Treat Me Right! turned out to be Williams amazing ward sister from 10 years previously!

So, 20 years on from Williams experience, 10 years on from the start of Treat Me Right! – are people experiencing better healthcare? Do medical staff feel knowledgeable and confident in supporting people who have learning disabilities and autism? Is it still the luck of the draw dependent on who treats you?

The recent Learning Disability Mortality Review report suggests that not only has not much changed – it has actually got worse. People with learning disabilities and / or autism are likely to die up to 29 years earlier than the rest of the population.

In 2016, Oliver McGowan was also diagnosed with neuroleptic malignant syndrome and he died. What he and his family experienced in terms of understanding his needs was so far removed from what William went through almost two decades earlier!

In the absence of anything more substantial arising from the recent LEDER report, Oliver’s mother Paula has issued a call to action – for all doctors and nurses to receive mandatory autism / learning disability training. Paula has had the courage and strength whilst coping with unimaginable grief to push for what should be a given and for the work of projects like Treat Me Right! to be in place across the country, not only available but mandatory to all.

What Certitude has learnt through our Treat Me Right! work is that not only is the training absolutely essential for all health care staff, it is without doubt best provided by people who themselves have a learning disability or autism; who have the authority, skill, knowledge and experience to make the difference.  We have seen the positive impact Treat Me Rights work has had in increasing awareness and knowledge and the difference made to the lives of people with learning disabilities and autism.

This week is Learning Disability Week, if you only do one thing this week in recognition of that fact- support the call for learning disability and autism training for healthcare staff. You can sign Paula’s petition here.

Marianne Selby-Boothroyd
Director of Development