Light at the end of the tunnel - the 10 year NHS plan

I woke up quite early on Friday 10th August and I was pleasantly surprised to read an article that autistic people and those with learning disabilities are a priority for the NHS in the next 10 year plan. I literally was ecstatic by this news. I immediately called my colleagues Peter and Sunny.

We believe this is the first time in the NHS 70 years that autistic people and those with learning disabilities have been a priority. A much needed priority for one of the most vulnerable groups in society and a minority whose voice is often ignored. But they certainly listened to them this time.  They have faced health inequalities since the NHS started and life expectancy is much shorter than wider population. This should be viewed as a historic time for autistic people and those with learning disabilities. Its been a long journey and many have suffered, with some paying the highest price but there is a light at the end of the tunnel.

Don't get us wrong we don't have grandiose ideas but we like to think a tiny little bit of us thinks we helped us to get this far. Back in May the Can You Understand It? (CYUI) team were presenting at a Learning Disability Today study day. We were on after Prof. Pauline Heslop from Bristol University who was speaking about the published report on LeDeR. She left a number of easy read reports, which Sunny started to read. He asked me what's the life expectancy of people with learning disabilities? I panicked and wanted the ground to open up and swallow me. Because I had a stroke in 2014, I find it hard when put under pressure and people who have had a stroke find it difficult to tell a lie. My answer was 'about 20 years before the wider population'. He went a pale colour and was really shocked by this information. He then said 'what are we going to do about this?' 

I spoke with my friend Peter Cronin, self advocate and he said we need to write a letter to Jeremy Hunt. Sunny also wanted to write a letter. So Sarah Bartlett helped us to write a letter and an easy read version, thanks to the CYUI? team. We put the letter out on five FaceBook groups, including self advocates and Learning Disability Nurses. We also asked people to support this by signing the letter. Within two weeks we got over 500 supports of this letter. Members of the CYUI? team, Peter Cronin, Sarah Bartlett, Prof Ruth Northway and Debra Moore kindly led those supporting this.

So we emailed Jeremy Hunt, Sir Simon Stevens, CEO and Ray James, Learning Disability Lead at NHS England. We received immediate replies from all three and stated that we should expect a full reply within 18 working days. During this interval we started to send tweets to Jeremy Hunt and Ray James - its something I'm not proud of, but we have learnt so much about the government and we know that they don't take these personally. We also informed everyone who supported this on FaceBook and Twitter of updates.


First reply was from Jeremy Hunt's office (just before he left). We were really disappointed by the reply, it was obviously written by a civil servant, who does not know anything about autism or learning disabilities. Also Pauline McGowan received a response to Oliver's petition on the same day. They had obviously cut and paste, as both replies were very similar.  


Then there is hope, someone that cares for people with learning disability and autistic individuals. Ray James wrote to us on behalf of Sir Simon Stevens. This had a completely different tone and he invited us to meet with him. We were so pleased to be heard. We are going to meet Ray on the 3rd October. 


So we were planning to meet several times before October 3rd, to write out our key points and what we want to happen in the future. We would have to practice this because we wanted to look professional. 


But then on the 9th August they released the statement about the 10 year NHS plan. We all breathed a sigh of relief and to know that we will go into the meeting with Ray James with a more positive outlook instead of fighting our corner like Citizen Smith.

We believe it is for all of us to support the NHS. Rome wasn't built in a day but we have 10 years to take advantage of this opportunity. I know that some people have lost loved ones that took us to this point and I do not mean any disrespect. But if anything can come out of all the pain experienced and living with a memory, hopefully we can dedicate this progressive move forward to all those who lost their lives.


We will be offering our knowledge, experience, stories and whatever is needed to make this NHS plan delivers what it aims to.


Steve Hardy
RNLD