Register may make life easier for those with MS
A solution to the country's 'shocking' record on multiple sclerosis (MS) care could be in the hands of patients themselves under a pioneering new project.
The MS Society has warned that the UK is one of the worst countries in Europe in which to have the neurological condition, with 'patchy care', a shortage in expert nurses and neurologists who are 'stretched to the limit'.
It is launching a new register combining patient details and routine NHS information with expert clinical data to support future research and hopefully transform the delivery of drugs, care and services.
Diane Proctor, head of support services at the Norwich branch, has fought for more than a decade to establish a Norfolk register so patient information can be shared more freely between health organisations.
'It's a very tricky area,' she said. 'We knew that without a register life would be extremely difficult and that has proved to be the case. When you don't even know how many people have MS, how can you draw funding appropriately?
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'The register is hugely exciting and something we have tried to do for many years. We are lagging behind the rest of Europe and it's time we got our act together.'
Ranking the UK against other countries in terms of access to MS drugs, the charity found only Romania, Poland, Lithuania, Bulgaria and Estonia were worse.
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The UK also scored third worst in Europe – behind Ireland and Poland – for the number of neurologists per person with MS, despite having one of the highest prevalence rates.
British patients are 'missing out on a number of levels' and deep government cuts and slashed disability benefits could leave them even worse off, the society has warned.
The MS register will be the first in the world for any condition to bring together information from all sources, but will only be a success if people sign up.
Simon Gillespie, chief executive of the MS Society, explained: 'Having MS can be devastating and robs some people of the best years of their lives. Having MS in the UK is currently an added disadvantage.
'Access to treatments and services for many is a daily battle and, in the current economic climate, things don't look set to improve.
'We are confident, with the right investment, MS is beatable within our generation and that's why we are launching the MS Register. The potential for change is profound. We urge everyone with MS to sign up. It's time to put MS on the map.'
By recording how many patients are being treated for the condition and where, Mrs Proctor said the areas most in need could be targeted and funding negotiated accordingly.
She said patients were keen to try different drug therapies, including Sativex – a cannabis-based painkiller – but many were expensive and not available on the NHS in Norfolk.
Sue Tomney, welfare officer at the King's Lynn branch, was diagnosed with MS in 1996 at the age of 42 after suffering from hearing problems.
'The problem in this area of Norfolk is the amount of time between phoning and asking for help and advice and actually getting it,' she said.
'I think it's worse in rural areas. By the time you get to see someone, you can be over your relapse.
'When it starts to take too long, you don't bother asking and rely on your family instead. For people on their own, it must be dreadful.'
North Norfolk MP Norman Lamb, chief political adviser to Liberal Democrat leader Nick Clegg and the Liberal Democrats' former health spokesman, said he was shocked by the UK's ranking and welcomed the register, launched as part of MS Week.
'It's not a finding that anyone can be comfortable with or find acceptable,' he said.
'We have got to try and find ways of improving access. MS is an intensely challenging condition which causes enormous distress for individuals and families.
'In this day and age we need to do everything we can to make life as good as possible for people with the condition.'
People with MS anywhere in the UK can join the register by logging on to www.ukmsregister.org. All information provided will be anonymous and confidential. Click on www.mssociety.org.uk for more information.