People with a learning disability often have poorer physical and mental health than the general population. In 2006, the Disability Rights Commission recommended the introduction of annual health checks (AHCs) for people with learning disabilities in England and Wales as a result of a formal investigation into health inequalities in this group. The checks were subsequently introduced in Wales in 2006 and England in 2008.
At our health and wellbeing conference earlier this year, Ismail Kaji, a Parliamentary Affairs Support Officer for Mencap, spoke about his work on various health campaigns and how he has witnessed successive governments attempt to improve the health and wellbeing of people with a learning disability through initiatives such as annual health checks.
As someone who has a learning disability and complex health problems, Ismail has welcomed attempts from ministers to improve the health of people with a learning disability but says there is still a long way to go.
“People with a learning disability are more likely to have complex health needs. We are more likely to have more than one long-term health condition, and we tend to get one at a younger age,” he said. “This means we need a lot of support from healthcare services throughout our lives, but we also find it harder to use healthcare services and often miss out on the care we need.”
“Research shows that when healthcare services cannot meet our needs, people with learning disabilities are at risk of avoidable deaths. So good care from the GP surgeries is one of the most important things to help us stay healthy,” he added.
Annual health checks are designed to help people with learning disabilities stay well by identifying and addressing any health concerns early. They are available to anyone over the age of 14 with a learning disability, but the person must be on the learning disability register. Ismail highlights that many people with learning disabilities are not on their GP’s learning disability register, leaving them unable to access the health check scheme.
“The GP needs to know we have a learning disability and put us on the learning disability register,” he said. “NHS England’s data on annual health checks shows that almost eight of every 10 people on the learning disability register had an annual health check last year. But for every four people with a learning disability, around three are missing from the learning disability register. This means it is likely that for every 10 people with a learning disability, around six are missing from the learning disability register. Many people will have missed out on annual health checks because of this.”
Ismail also examined the data for his own GP surgery in Walthamstow. He wanted to know how many people were on the learning disability register and how many were missing.
“I found out there are 70 people on my GP surgery’s learning disability register in Walthamstow,” he said. “The NHS data does not say how many people are likely to be missing, and there are no real targets for having more people on the register.”
“I also looked at what the data said about annual health checks at my GP surgery, and almost everyone on the register had an annual health check,” he added. “The data also said everyone at my surgery got a Health Action Plan. This was strange to me because I don’t think I’ve ever seen a Health Action Plan, so I wonder if the plans were just on a computer or just for the doctors and not for the patients.”
The government’s ‘Valuing People’ initiative promoted health action plans to improve the lives of people with learning disabilities. According to the Department of Health, a Health Action Plan should record a person’s health and provide information about how to stay healthy. There should be two copies: one for the individual in an Easy Read format and one for the family doctor or GP on paper or on a computer.
The Valuing People white paper, published in 2001, stated that the government would: “Enable all people with learning disabilities to have access to a health facilitator and to have a Health Action Plan”, but as Ismail explained, we know this commitment has not been met. Ismail, therefore, says an improved system is needed to ensure people get the support they need.
Some people also have poor experiences with healthcare professionals, which can prevent them from returning for their annual health check. A few years ago, Mencap ran a survey about going to their GP surgery. While some people said they had good experiences at their GP, many said they experienced problems.
Those who had good experiences said this was often because of one helpful member of staff or because they pushed to make the check happen themselves. Those with more negative experiences said they were not asked about their support needs and did not get the reasonable adjustments required. Ismail said he has had mixed experiences during his most recent annual health check.
“I’ve been to my GP surgery for an annual health check twice this year,” he said. “The first time I went, I had a poor experience. It was with [a doctor] I didn’t know, and they did not seem to know why I was there. So, the surgery called me and arranged another appointment, this time with a doctor I knew. Because I have complex health needs, it’s important for me to see someone I know and talk through my health conditions.”
Ismail’s account underscores the importance of ensuring people with learning disabilities can see a ‘family doctor’ or a healthcare professional they know and trust. This improves the person’s experience of an annual health check and makes any negative health changes more likely to be detected. However, Mencap’s survey revealed that this is not happening frequently enough.
Ismail, therefore, concludes that while some data may make it look like we have the healthcare system we need for people with a learning disability, real-life experiences show that there is much more work to do.
“On paper, it looks like nearly everyone is getting annual health checks and health action plans. We should have accessible information as standard, everyone’s support needs for communication should be written down, and people should be getting reasonable adjustments. But experts by experience tell us that this isn’t happening, and that’s why my job is really important to engage with MPs and health professionals.
“It’s so important that people with a learning disability get the right health support. We need to make sure our healthcare system works for people with a learning disability. We need a system that works in real life and on paper,” he said.
This article is based on a talk given at our health and wellbeing conference by Ismail Kaji, Parliamentary & Government Engagement Officer at Mencap and Co-Clerk to the All Party Parliamentary Group on Learning Disability.
