Incurable disease patients ‘suffer funds bias’

SCOTTISH patients with incurable and debilitating neurological conditions are suffering a funding “bias” in access to health and social care services, campaigners claimed.

Jan McMenemy, 66, of Glasgow, discovered she carried the Huntingtons gene in 1995. Picture: John Devlin

The Scottish Huntington’s Association (SHA) said a patient with Huntington’s disease (HD) would have an average of £7,500 spent on their treatment and care each year compared to over £30,000 for cancer patients.

The charity said the same bias in spending was found in other long-term degenerative illnesses such as Parkinson’s and motor neurone disease (MND).

While not saying that funding for other illnesses should be cut, they called for a “more realistic alignment“ of spending priorities in health and social care in Scotland.

The SHA calculated how much a Huntington’s patient might be expected to receive using their own figures on the level of social care and medical support provided on average.

This was compared to figures from a report by private healthcare provider Bupa which revealed that £9.4 billion was spent by the NHS on cancer diagnosis and treatment in 2010 in the UK, amounting to an average of around £30,000 for the 318,000 patients who were cared for. This figure is projected to rise to almost £40,000 by 2021.

SHA said, unlike their own calculations, these figures did not take into account the wider social care costs of looking after cancer patients, which would significantly increase the total.

SHA chief executive John Eden said: “Each HD patient has on average £7,500 spent on their medical treatment. That is drugs, psychiatrist and neurological treatments, but also on wider social care. Support from speech and language therapists, dieticians, occupational health specialists, physiotherapists and social workers is all required to ensure people living with HD have as comfortable a quality of life as possible.

“This is a small percentage of what is dedicated to diseases such as cancer. It is never an either/or situation but I would like to see more equilibrium in spending when it comes to what resources go towards what condition. “I don’t believe HD treatment is alone in this bias in spending. I think if work was done of other degenerative long-term illnesses like motor neurone and Parkinson’s the pattern would be similar. There needs to be a more realistic realignment on medical and social care spending priorities.”

Charities working with Parkinson’s and MND patients also backed up concerns about a lack of funding.

Tanith Muller, campaigns manager for Parkinson’s UK in Scotland, said neurological conditions in general are “massively” under-funded, while Susan Webster, head of policy and campaigns at MND Scotland, said they had highlighted the postcode lottery of personal care charging for under-65s who are terminally ill with MND.

She added: “MND Scotland has discovered that many people with MND are being charged for personal care when they should be exempt.”

A Scottish Government spokesman said: “Healthcare funding is a complex issue and different diseases require different treatments and approaches. Levels of funding are under constant review to ensure that resources are distributed effectively and that everyone gets the best possible level of care.

“In addition to the funding for neurological conditions which comes from general allocation to health boards, the Scottish Government also provides more than £1.6 million to NHS Boards, the Neurological Alliance of Scotland and the National Neurological Advisory Group to support improvements in care and services for people with neurological conditions.”

CASE STUDY

Little information on disease that plagued family

JAN McMenemy, 66, of Glasgow, discovered she carried the Huntington’s gene in 1995 after her brother was diagnosed with the disease, and they realised it was probably the same condition which killed their mother in the 1970s.

Ms McMenemy started suffering early symptoms of Huntington’s about ten years ago and has had problems with her movement and concentration.

“There was no information available when I first got told the news,” she said.

“I went to the library and there was one paragraph and it just said ‘it’s called Huntington’s chorea [as it was originally named] and there’s no cure’. That was it.”

She found more information and support from the charity Scottish Huntington’s Association and has since helped them produce new material to provide to others affected by Huntington’s.