‘My sister is disabled but is treated like a second class citizen by the NHS’

The family of a woman with a learning disability have called for national guidelines for NHS staff on how to treat vulnerable patients after she was treated “like a piece of meat” on multiple visits to hospital.

Caroline Spooner, from Bedford, was recently referred to hospital with a chest infection, a common cause of sepsis, and low oxygen levels. She was admitted after a five-hour wait in the Emergency Department, but the 59-year-old, who is non-verbal and quadriplegic, was placed in a bed furthest away from the nurses’ station.

Her sister, Julie Benson, said this put Caroline at a disadvantage because, unlike able-bodied patients, she could not call nurses for help when her health deteriorated. Mrs Benson, 56, also said it took staff much longer to recognise her condition because of her sister’s learning disability and complex needs.

“I got a call from the doctor asking if I would sign a Do Not Resuscitate (DNR) order, which I didn’t want to do. I came back and Caroline had a curtain around her bed, so how could anyone tell if she needed help? She was not on oxygen and not intubated, but they still wanted me to sign a DNR. She did not need any high-level medical intervention. It was not a matter of life and death.

“If I came in with a chest infection, the hospital staff wouldn’t say to my partner or my children, ‘We’re not going to resuscitate her.’ But when I challenged the DNR, the staff told me that the intensive care team would not resuscitate Caroline. At that point I said, ‘I’ll see you in court on that one.’

“Because people are unable to act, it’s almost as if their life is worth less than someone who would talk to you. NHS staff assume that because she’s non-verbal etc., her quality of life is not great and therefore not worth the resources. And that’s in every hospital we go to. She gets worse with every hospital stay. That really makes me angry.”

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After three weeks of intravenous antibiotics, Caroline was finally discharged, but every visit was equally traumatic for her and her family.

“This is pretty much the same experience we have whenever Caroline is taken to hospital for whatever reason, which has happened pretty much every year for the past 15 years,” Ms Benson said. i.

“She has to get everything done, but most hospitals don’t have a hoist, they don’t have enough staff to make sure she gets out of bed regularly. And because she’s often lying flat, she’s at risk of aspiration, when something you swallow gets into your airways or lungs and can cause an infection.

“And that’s what happened a couple of years ago. It started as pneumonia and turned into sepsis, which was really scary. But what really hit me was the visit eight weeks ago with the chest infection and the question about the DNR.”

Mencap, a UK charity for people with learning disabilities, published a report in 2007 entitled Death by indifferencewhich followed the horrific deaths in NHS care of six people with learning disabilities. Their families were left with no answers as to why their loved ones had died, or why they were being treated so badly because they had a learning disability.

“That was 20 years ago and it feels like nothing has changed, so it needs to be brought back,” Ms Benson said. “The way people with learning disabilities are treated in hospital is so different to the way I would be treated. And that’s what really makes me angry.”

Last year an article was published in the BMJ found that people with learning disabilities were almost four times more likely to develop sepsis than able-bodied people. Researchers said their findings highlighted the urgent need for sepsis risk prediction models that take learning disabilities into account.

Ms Benson said a lack of specialist training among NHS staff was exacerbating the problem. Mencap supports the family’s call for greater awareness of learning disabilities and the support people with the condition should receive from healthcare professionals, and is also calling for more nurses trained in learning disabilities.

Ms Benson said: “We just want Caroline and others to be treated as people, not pieces of meat. Cannulating people without telling them what is happening, leaving people lying in their own urine for up to three hours, which we have also witnessed, is unnecessary and unacceptable. People with learning disabilities are people and deserve to be treated as such.

“Right now we just live in constant worry. As soon as I get a call that Caroline is on her way to the hospital, I panic.”

Mencap also wants more people to be on the list of people with a learning disability, so that they can get the help they need. They also want to know how they can support healthcare professionals and get priority for vaccinations, for example against flu. Currently only a quarter of people with a learning disability are on the list.

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Recent figures from NHS Digital reveal a loss of more than 2,000 learning disability nurses since May 2010, and campaigners are concerned that this will widen existing health inequalities for people with learning disabilities. And last month, research from the Scottish Learning Disabilities Observatory found that adults with learning disabilities are more likely to die from cancer compared to the general population, which has a higher rate of preventable cancer deaths. On average, people with learning disabilities are likely to live 23 years less than those without, due to difficulties accessing the care they need, plus stigma and discrimination.

Jon Sparkes, CEO at Mencap, said: “It is completely unacceptable that people with learning disabilities are more likely to die from conditions such as sepsis, when in many cases these deaths are preventable. We hear from people with learning disabilities who are not getting the healthcare they need because they are not supported to communicate or are less aware of worrying symptoms and when to get help.

“Doctors and nurses may also wrongly dismiss a medical condition as being caused by their learning disability and fail to make reasonable adjustments to support the person. The reduced number of specialist learning disability nurses also exacerbates this situation.

“Cuts to social care mean there is not enough community support for people with learning disabilities. This means many will miss out on the consistent help of a professional, which can be crucial in accessing overstretched GPs and other health services.

“No one with a learning disability should die a preventable death and that’s why we’re campaigning to end health inequalities with the support of partners like Omaze, who are raising money for us through their Million Pound House Draw in Yorkshire.

“We need to accelerate the rollout of the vital new training in the NHS (the Oliver McGowan Mandatory Training), recruit more learning disability nurses and raise awareness of the learning disability register with GPs and annual health checks so that people’s needs for reasonable adjustments are raised with all healthcare staff.”

A Department of Health and Social Care spokesperson said: “We are really sorry to hear about Caroline’s experience and this case is very concerning. The NHS is broken and we are working hard to get it back on its feet and improve patient safety, while putting in place a 10-year plan to fix it.

“There is clear guidance on identifying sepsis, which urges clinicians to take extra care when assessing people with learning disabilities. It is vital that trusts ensure their staff follow this advice.”

Health and care services must provide staff with specific training on learning disabilities and autism, to ensure staff have the right knowledge and skills to provide safe care. To support providers in meeting the statutory training requirements, officials have rolled out the Oliver McGowan Mandatory Training on Learning Disability and Autism to health and adult care staff. More than 1.7 million people have completed the e-learning package, which is the first part of this training.

Officials also believe the introduction of Martha’s Rule will play a key role in enabling patients and families to seek a rapid assessment, from someone outside their primary care team, if they are concerned their condition is deteriorating – helping to spot the signs of sepsis early. Hospitals have been offered funding to implement the rule since April, following a campaign by the parents of Martha Mills, 13, who died from sepsis because her symptoms went undetected.

An NHS spokesperson said: “NHS staff work exceptionally hard to keep patients safe and NHS England has supported the implementation of the National Early Warning Score to improve recognition of all causes of deterioration, including sepsis, as well as patient safety initiatives such as Martha’s Rule, which enables patients and families to request urgent investigation if their condition deteriorates.

“The NHS remains fully committed to increasing support for people with a learning disability and has rolled out a new ‘digital flag’ on patient records to ensure staff know if their patient has a learning disability and what reasonable adjustments they need, as well as supporting the development of the Oliver McGowan Mandatory Training on Learning Disability and Autism, which has been consulted by over a million health and care staff.”