Throughout the coronavirus pandemic, a lack in provision of care for people with a learning disability has brought attention to the need for reform in the healthcare system. It is evident change needs to happen.
Between 10 April and 15 May 2020, the number of people with a learning disability who died and were receiving care from support services in England increased by 134 per cent compared to 2019, according to the Care Quality Commission. Of these 386 deaths, 206 were as a result of suspected or confirmed COVID-19.
This is just one figure that has highlighted inequalities in care over the first half of the year, leading to greater calls for equal access and change.
“People with a learning disability have a right to equal access to healthcare. However, what we’re seeing during the COVID-19 crisis is far from it,” reveals Dan Scorer, head of policy at Mencap.
“Some people have reported an excellent standard of care and engagement from their GP, while others have experienced serious issues – including instances of very concerning practices from some GPs.”
Mencap have worked tirelessly throughout the pandemic to provide support to people with a learning disability, their families and carers, alongside continuing to campaign for better practices in healthcare.
Some people’s experiences have caused high levels of concern, Dan explains: “We have seen letters discouraging people with a learning disability from going to hospital if they fell ill because they were unlikely to be prioritised for medical treatment, and in extreme circumstances unlawful Do Not Resuscitate notices have been placed on people’s files.
“Despite NHS England decrying blanket decision making, more needs to be done to ensure disabled people can be confident that they will be able to access equal care to everyone else.”
Brendan, who has cerebral palsy, has worked with Harrow Mencap and Mencap for more than two years, campaigning for changes in the healthcare system, he says: “I think it’s so important to speak up for other people who don’t have the opportunity to speak up at all, and it’s important to hear what other people are saying because at the end of the day not a lot of people would ask if you are OK.”
Throughout the coronavirus pandemic, Brendan has felt people with a learning disability haven’t been represented or highlighted enough.
“The government have not highlighted the health of people who have a learning disability, they have highlighted people who are vulnerable,” emphasises Brendan. “Not everyone who has got a learning disability is vulnerable, so why don’t they find a way to protect everyone.”
Often, the way information about coronavirus has been presented has created a barrier for people with a learning disability when accessing services like their GP, but this has translated into physical barriers, too.
Robert*, who is supported by Bexley Mencap and uses a wheelchair, regularly attends his GP for leg ulcers to be dressed, but due to measures in place to prevent the spread of coronavirus, he had to be moved to a different leg clinic.
“The doctors have been good with telephone support; however, it has been more challenging if I needed to go and see them due to the oneway system they have in place, which wheelchairs can’t access,” explains Robert. “This is why my appointment for my legs was moved to another clinic.”
When Robert’s car broke, he couldn’t get out of his flat to attend his appointments. This meant the district nurse had to arrange home visits until repairs were complete, meaning Robert was seeing someone new for the second time during the pandemic, he says: “It’s important for me to see familiar people who I know, I find this a lot easier and that has been hard for me seeing different people all the time.”
While remote consultations and at-home appointments can be helpful, they can also put people at higher risk of the virus and can sometimes cause barriers to care.
“While we’ve heard about some innovative use of remote consultations for people with a learning disability, clear guidance is needed to adjust or avoid these methods where they become a barrier to accessing care,” emphasises Dan.
Clear guidance is one thing Brendan would like to see throughout all healthcare settings.
“The communication with my GP is good for me,” reveals Brendan. “I go to the GP on a regular basis and they give me a chance to say how I move, to ask if I’m OK, but then because I have my own support worker it’s easier.”
For himself and other people with a learning disability, Brendan wants to see an increase in clear communication from GPs and other healthcare providers.
“I would like to see more support in a sense of more communication, the way you give information to someone,” explains Brendan. “I think more learning disability nurses and more easy read information would help because it’s difficult to read the regular information to decide what is wrong.”
More easy read information and training for GPs on caring for people with a learning disability is necessary to improve care provision.
“We are calling on NHS England to issue guidance to GPs on how to recognise and support patients who may have had an unlawful DNR placed on them during the pandemic as well as guidance on other emerging issues: Including a need for support for those managing long term health conditions, such as epilepsy, who may have missed out on routine care,” says Dan.
“We have heard about examples where a GP has missed that somebody was unwell because they put the person’s symptoms down to the person’s learning disability,” he adds. “This is not a new problem, but we believe it has been exacerbated by remote consultations.”
As more routine care is resumed, an increase in the quality of healthcare provided for people with a learning disability is more important than ever.
If you have a learning disability, or provide support to someone who does, and need information and advice, contact the Mencap helpline on 0808 808 1111.
*Names changed to protect identities