Postcode lottery of care for Scots MS sufferers

GLARING gaps in the treatment and support available for multiple sclerosis (MS) sufferers in Scotland are revealed in a report out today – described as a sobering wake-up call for the health service.

According to the study, only about one-third of sufferers who could benefit from life-transforming medicines are taking them – one of the worst rates in Europe.

Four NHS boards are failing to meet official standards for giving patients access to the range of specialists they need, according to the research by the MS Society.

The report, titled A Lottery of Treatment and Care – MS Services across Scotland and the UK, reveals one-quarter of patients say they cannot see a neurologist when they need help with their symptoms.

Christine Carlin, director of the charity in Scotland, says in the foreword: “This report should be a sobering wake-up call for all of us working to improve the lives of people with MS in the UK.

“For the 10,500 people in Scotland who live with MS, there remains great inequality in the services, support and care available across the country.”

Scotland has one of the highest rates of MS in the world, but Ms Carlin said the survey found too many areas where care and treatment lagged behind other parts of the UK. She added: “Some of the statistics in this report are nothing short of shameful.”

The charity decided to survey its members across the UK last year to build a picture of the care they received nationwide and more than 10,500 responded, including 870 people in Scotland.

The poll revealed 36% of those sufferers with relapsing forms of MS were receiving medication that could help tackle their disease.

This figure is almost half the proportion of Northern Ireland, where patients are reviewed by health professionals twice a year, and also behind England. In Europe, only patients in Poland and Romania fare worse.

The survey also found a large variation in access to such potentially life-changing treatment across Scotland.

People living in the south-west – Ayrshire and Arran, Dumfries and Galloway, Greater Glasgow and Clyde and Lanarkshire – were more likely to be taking medication for their MS than those who live in other parts of the country.

Access to medications intended to manage MS symptoms was also very poor, with just 2% of the sample taking dedicated drugs.

Ross Smart, 33, from Bathgate, West Lothian, was diagnosed with primary progressive MS four years ago but has been told by his GP the NHS will not fund the treatment he wants in a bid to try to manage his symptoms.

He is in a situation where he does not know where to get information or what to do next.

He said: “I feel like I’m in limbo right now. It’s a hard situation to deal with, knowing that there’s something that could make a huge difference to my quality of life, but that seems to be out of reach on the NHS.”

The survey found 75% of people with MS living in Scotland felt they were able to see a neurologist when they needed to, compared with 92% in Northern Ireland and 84% in England.

Support for carers was also patchy nationwide and Scottish patients were less likely to have received the help they need to continue working than those in England and Northern Ireland.

However, Scotland did compare well when it came to offering patients courses to help them manage their own condition.

The survey found 53% were being given this opportunity, much higher than the average for the UK and a result of Scottish Government investment.

Public Health Minister Michael Matheson said: “We welcome the MS Society’s report and agree that people living with neuromuscular conditions, including MS, and their families should get access to high-quality care and support. This is all the more important given the high prevalence of MS in Scotland.

“Implementation of the Neurological Clinical Standards will ensure people with MS get the earliest and most appropriate neurological treatment locally, but with access to specialist services when needed. That’s why we previously provided boards with over £1 million to develop improvement groups to ensure Neurological Standards are met.

“Progress will be monitored by the National Neurological Advisory Group who have identified MS as a priority and we continue to work with boards and the third sector to improve services for people with MS in Scotland.”

http://www.heraldscotland.com/news/health/

 

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