OUT NOW: A report on a project to understand the workforces role in improving annual health checks for people with a learning disability

Annual Health Checks – a family perspective & what we have been doing about health checks

Click here to go to the report or on read on to hear a family perspective and what this amazing collborative have been doing

Getting people gloriously ordinary lives is my work and home life mantra. That means people living lives that include everything from the mundane of shopping, cooking, cleaning and arguing with your family to having fab holidays, work that you love and the partner of your dreams.

Up there with the mundane stuff is day to day health stuff – not eating too much rubbish or drinking too much wine, getting your smear on time, monitoring your blood pressure. Most of us have at least a passing relationship with our GP to keep an eye on or get support for some of those things.

I was a foster carer and I’m now a Shared Lives Carer to two wonderful young people who I will call Sam and Lucy. Sam came to live with me when he was 10 and he is now 26. 18 months later, Lucy joined us, and she is now 22. They are both autistic and Lucy is on the Dynamic Support Register as she often finds life pretty tough and shows that by hurting herself – often significantly.

I have always worked hard to make sure that our GP practice know us as a family before I need their help because one of us is ill. When we moved house two and a half years ago, I asked for an appointment with my new GP when I registered with the practice. I explained our family situation and our specific health needs and explained the reasonable adjustments we need, specifically around neither Sam or Lucy being very good at waiting in noisy areas.

Lucy’s last face to face Annual Health Check was just before lockdown. Our surgery called me to say that they wanted to book her appointment and offered me several daytime appointments. Lucy was at college and would have been really stressed if she had to get there late or leave early. The receptionist said that she could fit Lucy in during the nurse’s Well Woman clinic on a Thursday evening – that was perfect. She booked her in for the last appointment and we agreed that she could come in and wait in a spare consulting room rather than the main waiting room.

The surgery sent us the paperwork for the check, including an easy read pre-check questionnaire. Lucy doesn’t use many words, so not all of it was useful to her, but it did give me a framework to talk to her about what would happen. She was clear she wanted her blood pressure taken (she loves this – we think it gives her great sensory feedback) and that she wanted to take a photo of the nurse – this is something that is really important to Lucy as it helps her process who she has seen each day. It was a good reminder for me as it meant I could warn the nurse in advance and reassure her that it is just for Lucy’s filing and would not be uploaded onto social media.

The pre-check questionnaire also helped me to think about the issues I wanted to bring up at the Annual Health Check:

  • Lucy’s weight. Since leaving school, she had put on two stone and was a lot less active than she used to be
  • PMT: Lucy has horrible PMT, and irregular periods and I wondered if she might have polycystic ovaries
  • Thyroid: as well as the weight gain, Lucy’s hair had got thinner, and I wanted to talk to the nurse about a check of her thyroid levels

These are all things I could have made an appointment with the GP to discuss, but the Annual Health Check gave me the prompt to do so, and the opportunity to talk about three separate things – I’d have needed more than a double appointment with the GP to do this.

The main part of the check was done by the nurse, who was great with Lucy – really respectful and giving her time to answer, then checking she had understood properly. She indulged her need for blood pressure to be done on both arms – twice! She wanted to do a blood test for her thyroid, but Lucy was clear that this was not something she was prepared to do that day. – she struggles with demands that she hasn’t had time to prepare for.

The nurse respected this ‘no’ and we talked about how to get the test done on Lucy’s terms.

We left with a clear plan, and I felt good that the practice had got to know Lucy better.

We want all people to have a good experience of health checks as it can make such a difference to their lives.

We know that people with learning disabilities can have health problems they don’t know about, and can find it difficult to use health services. This can mean that people have untreated health problems – making life more difficult – as described above! This is why health checks were put in place in 2008. But 13 years later there are still people who do not have health checks.

To try and improve things, Health Education England asked The National Development Team for Inclusion, Skills for Care, the Voluntary Organisations Disability Group and Learning Disability England to work together on a project about what doctors, nurses, social care staff, families and people with learning disabilities need to do so more people get health checks. The project happened in the South of England and London.

We wanted to know:

• What people knew about health checks?
• What helped people get health checks?

The first part of the project was about finding out what was happening about health checks. We did a survey, and sent this out across England, 635 people filled it in. We also did focus groups and a Facebook discussion. The second part of the project was about helping people do more health checks. We could not meet up with people because of Covid -19, so wrote things to help people instead and talked to people on the computer.

One thing we found out was that lots of people wanted information about health checks.

But we also knew that there was lots of information already out there. So, we wrote a guide about the information and how to find it:


We also wrote 4 short guides about health checks for:

  • Young people, families and supporters
  • Self-advocates
  • Families and social care providers
  • GPs, health staff and people who buy services.

And a guide about how to do health checks in a pandemic: www.ndti.org.uk/resources/health-check-resources-guides

We hope these guides will help get more people health checks so they can live the lives they want.

For more information about what we did, see our report and easy read version by clicking here

For more details on this project please contact:
Madeline Cooper
Tel: 01225 255 268
Email: Madeline.Cooper@ndti.org.uk


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