‘Lack of care’ scandal of motor neurone victims
THE LACK of care for people with motor neurone disease is causing distress and leading some sufferers to contemplate suicide.
Research shows that palliative care designed to improve quality of life is often not received until the very end, despite MND being a terminal illness.
The research, co-funded by the MND Association and Marie Curie, analysed the experiences of 358 patients and 369 carers to find common experiences and patterns.
It showed that earlier introduction of care can improve patients’ lives, as well as their ability to cope with living with the disease.
Kate Flemming, professor of hospice practice at the University of York, which conducted the research, says: “We wanted to get a good understanding of people’s experiences with palliative care – and the common thread was that they experience very little until the very end of their life.
“Palliative care should occur much earlier, at the point of diagnosis.
“It is a terminal condition and it is at this point that people know there is nothing more that can be done.
“If it was available earlier people could make considered decisions about what they should do as their illness progresses. This allows patients to maintain a sense of control over an uncontrollable disease and can make them feel better.
“People having suicidal thoughts is shocking because they don’t have enough support to mitigate against that happening.”
Dr Adrian Tookman, medical director at Marie Curie Hospice, in Hampstead, north London, agrees.
He said: “The experiences highlighted in this paper feel very familiar. Many people I meet who have MND have articulated the same feelings of a lack of control, fear around the progression of their disease and, in the most extreme cases, suicidal thoughts.
“There is still a lot to be done to educate people, healthcare professionals included, about the positive impact of palliative care.
“An important message is that this care is not just for people with cancer and we need to reach more of the people who miss out.as this research shows, the emotional stress for patients and their loved ones is profound when the right care and support isn’t there.”
Motor neurone disease describes a group of diseases that attack the nerves which control movement, so muscles no longer work.
It does not affect sight, sound or feeling, leaving some patients locked in a failing body unable to move and, eventually, breathe.
Up to 5,000 people are living with the disease in the UK and, once diagnosed, life expectancy can vary from a few months to several years. The research found, because the disease is rare, there is a lack of knowledge among health workers. It concluded that as well as earlier intervention, patients would benefit from seeing one healthcare professional who knows their history.
Father-of-two David Bol-sher, from York, was diagnosed with MND in November 2012 and died 14 months later, aged 46.
His wife Samantha, now 53, says: “I think having palliative support earlier would definitely make coping easier. With this disease, with the speed at which it progresses, you are always having to play catch-up. If we had started preparing for things earlier we could have got our heads around what we were facing a little quicker. David took a lot of the decisions in our family – I know he felt angry at the
‘Some think about suicide’
‘This disease is so scary’
lack of control he had. As a carer to someone with a disease many don’t know much about, you are faced with a situation where you need to research the illness and become an expert, although you don’t want to, because it is scary.
“Having someone on hand to give guidance on very difficult decisions would be very helpful.”
An NHS spokesman said: “Decisions around care and access to treatment, including end of life care, are made on an individual basis and with clinicians, in consultation with the patient or their family. This may involve family members caring for those receiving end of life care, supported by expert clinicians, but no individual will be asked to do things they cannot, or do not wish to do.”