Getting hospital treatment right

For people with learning disabilities and autism, any hospital procedure can be particularly daunting.

Certitude’s Treat Me Right! team has been providing specialist support in this area for ten years.

Recently Ben*, who has profound learning disabilities and autism, required a colonoscopy and blood test to get a clear picture of his health, ensuring he could receive prompt treatment if needed.

Treat Me Right! experts worked with Ben’s regular Certitude support team to consider:

  • Ben’s capacity to understand and consent to the tests
  • If a ‘best interest’ meeting with health professionals, Ben’s carers and advocate might help and how best to co-ordinate this
  • How best to liaise with hospital staff to make reasonable adjustments for Ben to ensure the tests would go as smoothly as possible
  • Supporting Ben and his support team to co-ordinate the procedure with any tests the GP required

In Ben’s case these adjustments included playing Ben’s favourite music while recovering from the anaesthetic, making sure the Treat Me Right! trained champion from the colonoscopy department was there on the day and having someone familiar support him before and after the procedure.

Barry, who supported Ben throughout said, “the support and advice from Treat Me Right! ensured that Ben got the best care and treatment. Everybody was on board and knew what to do, including me. The hospital staff made sure Ben was doing well throughout and everything went smoothly with little distress to him.”

*name has been changed to protect identity

You can find out more about the work Treat Me Right! here

Sharing experiences to educate professionals

Hospitals can be unnerving places for everyone and especially for people with learning disabilities who may find it hard to communicate.

Certitude’s Treat Me Right! team has been delivering Learning Disability and Autism Awareness training to hospital staff across West London for ten years. It employs people with learning disabilities and autism as trainers to describe their own experiences to clinicians first hand.

Here, some of the trainers tell us what it feels like to be able to share their stories and educate hospital staff.

John, who co-founded Treat Me Right! and has Down Syndrome says:

“I feel fantastic giving training in hospitals. I love telling people my story and experience of health care. I’d like to get more students involved. I love it when everyone claps my hard work and tells me I’m a good trainer. It means so much to me”.

Ben, who has autism says:

“Being a trainer isn’t about sitting down and staying still like a museum exhibit, but about really interacting with the attendees and telling my story. There are plenty of chances to speak about personal experiences and what autism is from a first-hand perspective”.

Anne, whose mother was a nurse, has a learning disability and adds:

“I love being a Learning Disability Awareness Trainer, it is like I am following in my mum’s footsteps, but in a different way, making sure the lives of people with learning disabilities are taken into account and doctors and nurses know how to treat us with respect”.

Finally, Berge, who has Down Syndrome adds:

“I feel like I have achieved a lot. I have taught a lot of different staff about learning disabilities and autism which is important. It’s really important to tell people about passports for learning disabilities.”

Treat Me Right! training always generates excellent feedback.

A nurse at St Mary’s Hospital said:

“This training will improve hospital experiences for people with learning disabilities and save lives.”

You can find out more about the work Treat Me Right! here.

Treat Me Right! Gets shortlisted to represent North West London in NHS’s 70th birthday Parliamentary Awards

Our Treat Me Right! Project has just been nominated for a Parliamentary Award and winners will be announced in early July.

It has been chosen from hundreds of applicants to represent North West London in the prestigious competition which marks the NHS’s 70th birthday.

About the awards

Launched in February, the NHS70 Parliamentary Awards asked MPs to find and nominate those individuals or teams they thought have made the biggest improvements to health services in their constituencies across ten categories. The Treat Me Right! Team was nominated by Virendra Sharma MP, Mark Field MP, Nick Hurd MP, Boris Johnson MP, and Tulip Siddiq MP.

From over 750 entries, senior experts chose four nominations in each category, which exemplify the best of what the NHS and its partners do day in, day out.

As regional champion in the Care and Compassion Award category, Treat Me Right! will now vie with other regional winners from across England for a national award. The award will be presented at a special ceremony in the Palace of Westminster on the 4th July.

Treat Me Right!

The Treat Me Right! Team, have trained frontline NHS staff to better understand the experiences of people with autism and learning disabilities, and to make reasonable adjustments to the way services are delivered where needed. The training directly helps people avoid escalation of distress and unnecessary hospital admissions.

To reach as many staff as possible (and therefore benefit as many patients as possible) the training was specifically adapted and tailored to different audiences and was co-delivered by someone who has lived experience of learning disability or autism.  One of the trainers, Ben, said, “Being a trainer isn’t about sitting down and staying still like a museum exhibit, but about really interacting with the attendees and telling my story.”

All of the MPs who nominated Treat Me Right! For an award have said fantastic things about the project.

Boris Johnson MP (South Ruislip and Uxbridge), said: “As the NHS marks its 70th birthday, these awards are a fantastic way to celebrate the achievements of the NHS. I’m delighted Treat Me Right! has been shortlisted for the Care and Compassion Award and that the judges have recognised the phenomenal work the team does.

It’s great to see such innovative work; designed with and delivered by people who have autism or learning difficulties, this scheme benefits from important insight to pinpoint reasonable adjustments for patients to help avoid any unnecessary distress. Well done again to all involved in Treat Me Right!”

Nick Hurd MP (Ruislip, Norwood and Pinner), said: “I was delighted to nominate the Treat Me Right! team for the NHS 70th birthday Parliamentary Awards.

The training they’ve delivered to NHS staff has had a real impact on minimising the potential stresses of hospital treatment for those with autism or a learning disability, and their unique methods of collaboration have produced strategies that are fully tailored to the needs of patients.

It is testament to their hard work that they have been nominated by so many of my parliamentary colleagues and I wish them the very best of luck in the final!”

Tulip Siddiq MP (Hampstead and Kilburn), said: “Brent is home to so many exceptional healthcare professionals, but I was particularly delighted to nominate Treat Me Right! for the Care and Compassion Award.

They offer a bespoke training service for frontline staff, producing hugely positive outcomes for those with learning difficulties and for the NHS as a whole.

I am thrilled that the programme has been shortlisted for this prestigious award, and it is my sincerest hope that the programme receives even more support as a result.”

Virendra Sharma MP (Ealing Southall) said: “I was proud to nominate the Treat Me Right! training programme for the Care and Compassion Award, and I’m extremely pleased to see that it has been very deservedly shortlisted.”

Mark Field MP (Cities of London and Westminster), said: “I’m delighted that Treat Me Right!, commissioned by NHS North West London CCGs is shortlisted for the national Care and Compassion award as part of the NHS70 Parliamentary Awards marking the 70th birthday of the NHS.

Treat Me Right!, designed with and delivered by people who have autism or learning disabilities provides frontline NHS staff with training to better understand the experiences of those with autism and to make adjustments to the way services are delivered.

The programme has been delivered to over 20 teams in the local area, with more than 750 staff members trained so far.

As the regional champion, the Treat Me Right! team will come to Parliament on 4 July (the day before the NHS’s 70th birthday) for the awards ceremony.

I look forward to welcoming the team to Parliament and I would like to wish them the best of luck for the national award. I would also like to take this opportunity to wish the NHS a very happy 70th birthday!”

What happens next?

All of the champions have been invited to the national awards ceremony on 4th July, the day before the NHS’s 70th birthday. We are keeping our fingers crossed for success on the night! In the meantime, a big well done to everyone involved.

Learning Disability Awareness training with MP Rupa Huq

Helen Cairns, Treat Me Right! Manager and John Keaveny, Treat Me Right! Learning Disability Awareness Trainer Coordinator delivered training to Dr Rupa Huq MP when she visited Certitude to gain a better understanding of the issues people with learning disabilities are facing. Here, John shares his experience…

Rupa Huq is my local MP and I first met her when she came to my house to see me and my housemates. After she visited, Aisling Duffy, the Chief Executive and I thought it would be a good idea to ask her if she would like some training about Learning Disability and Autism awareness. I usually do this with hospitals in my job as the Treat Me Right! Training Co-ordinator.  Helen Cairns Treat Me Right! Manager and I adapted it to suit what Dr Huq would need from the training.  We talked about lots of things, like awareness and how to better communicate with people with learning disabilities – that meant that I got to do my famous communication exercise! We delivered the training in our Training Room in Ealing and it was fun to use the new  big screen we have.

I think that it’s very important to train all kinds of people about Learning Disability and Autism awareness. I felt very proud to be providing training to my MP and I would love to do more training with other people in the House of Commons. Maybe even the Prime Minister one day! I would like to tell the Prime Minster all about Certitude and my job with Treat Me Right! I’d like to give her my business card so she can ask me questions whenever she wants. I would like to show her about all the different things people with learning disabilities can do.


Do you have a learning disability? Are you scared of going to the Hospital?

Treat me rightIf you find hospitals a bit overwhelming, we may be able to help at our tour of Ealing Hospital.

 Get to visit A&E, outpatients, a medical ward, a surgery ward, PALS and speak to the staff.

Ask as many questions as you like!

Visit Ealing Hospital on: Thursday 9th Oct 2014 at 10-12pm and 1-3pm

BOOKING IS ESSENTIAL. To find out more about book your place, visit Ealing Tour poster and booking form