UK one of worst countries in Western Europe to have MS warns MS Society, as it unveils world-first Register
Published date: 23 May 2011
Having multiple sclerosis (MS) is bad enough, but people in the UK fare worse than most other countries in Western Europe and are having to fight for access to the treatments and services they are entitled to.
That’s the stark warning from the MS Society at the start of MS Week (23-29 May), as the charity unveils a globally unique research tool, the MS Register, which it hopes will revolutionise the way people with MS access care and services they need in the future.
At the moment, a combination of factors means that people with MS in the UK miss out on a number of levels.
- The UK ranks worst in Western Europe in terms of access to MS drugs; only bettering Romania, Poland, Lithuania, Bulgaria and Estonia in Eastern Europe.
- Our neurologists are stretched to the limit, with the UK scoring third worst in Europe for numbers of neurologists per person despite having one of the highest prevalence rates.
- Care is patchy with cuts affecting even the most basic provision as huge numbers of councils restrict care and support to only those with critical needs. This combined with slashed disability benefits could leave many people with MS even worse off.
- There’s just one MS specialist nurse to every 454 people in the country, making it impossible for many people with MS to access this support.
- MS remains largely misunderstood with even GPs admitting their knowledge is limited.
It’s time, argues the MS Society, to put MS on the map.
Chief Executive Simon Gillespie explains: “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 the MS Society is 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.”
The MS Register, based at Swansea University, is the first globally, for any condition, to combine information inputted by patients themselves with clinical data and routine NHS information. Anyone with MS in the UK can join the MS Register online at www.ukmsregister.org. In addition, five pilot sites across the UK (Belfast, Edinburgh, Swansea, Nottingham and London) will test the technology that combines patient data with clinical data provided by neurologists and routine NHS information. Once this phase is complete, the MS Register will be rolled out across the UK.
The long-term possibilities of what the MS Register could achieve are endless:
- It could transform the delivery of care and services for people with MS.
- It has the potential to revolutionise the focus of MS research, opening new avenues to explore.
- It could lead to much more accessible and targeted clinical trials for people with MS.
- It will provide new and highly accurate evidence to present to government and anyone working in the field for more targeted funding and support for people with MS.
- It will support future research that could help find the causes of MS and ultimately help find a cure.
But, warns the charity, the MS Register will only work if enough people with MS take part. That’s why a number of high-profile supporters are today coming together to urge people to sign up.
High profile supporters back the MS Register
At just eight years of age Hairy Biker Dave Myers’ mum was diagnosed with multiple sclerosis. He’s getting behind MS Week, and encouraging others to do the same. He said: “MS Week marks a time to really rev up awareness of MS and help put it on the map. It’s the most common disabling neurological condition affecting young adults and yet there’s still so much we don’t know about it. The launch of this globally unique MS Register has the power to transform care and support for people with MS forever. If you have MS, don’t miss your chance. Join the MS Register now and help shape the future.”
Alan Carr, whose close friend Carolyn has MS said: “There’s currently no cure for MS, and to find one, more research is desperately needed. That’s why the MS Register- a powerful research tool- is being unveiled this MS Week. It’s a turning point in knowing more about this potentially devastating condition that affects around 100,000 people in the UK. The full picture of the impact of MS will eventually be clear for the very first time. Become part of the bigger picture and join the MS Register now.”
Healthcare experts back the MS Register
Support is also flooding in from professionals who understand just what a groundbreaking project the MS Register is.
Sir Muir Gray, Chief Knowledge Officer of the NHS and a lifelong advocate of patient empowerment said: “Is care for people with MS better in Liverpool or Manchester? Which service for MS improved most last year? These questions cannot be answered at present. We know that some hospitals provide excellent care but we do not know what proportion of people with MS in the population they serve are being seen, or whether it is the patients in greatest need. To answer these questions we need to focus on the population of people with MS, and to do this we need the MS register. The development of high value, high quality MS care needs the MS Register.”
Jeremy Chataway, consultant neurologist at the National Hospital for Neurology and Neurosurgery adds: “We have been in the dark for far too long about MS. The MS Register has the potential to change that, to revolutionise patient care and services for people with MS and to streamline the way we conduct research in this country.”
The MS Society believes that knowledge and information about the impact of MS is where our understanding of cancer was 50 years ago before the Cancer Registry was introduced. The Cancer Registry has led to numerous breakthroughs and improved health outcomes for people with cancer. With the launch of the MS Register comes the potential for vastly improved care, more targeted research and better service provision for people living with MS. Better, though, than the Cancer Registry, the MS Register will says the charity, provide much more accurate information about the condition by involving people with MS themselves rather than just collecting routine NHS data.
People with MS anywhere in the UK can join the MS Register from today by logging on to www.ukmsregister.org. All information provided will be anonymous and confidential.
To support MS Week visit www.mapms.org.uk
For more information, interviews etc contact the MS Society press office on 020 8438 0782 or 020 8438 0840 or email firstname.lastname@example.org
For urgent / out of hours enquiries try 07909 851 401
Notes to editors
- Access to MS drugs: DH report 2010 Extent and causes of international variations in drug usage, read more: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_117962 and MS Barometer 2008, read more http://www.ms-id.org/barometer2008/
- Neurologists per person in Europe: MS Barometer 2008, read more: http://www.ms-id.org/barometer2008/
- Social care - A recent report by the Association of Directors of Adult Social Services found that the number of councils who fund care for people assessed as having "moderate" or "low" needs has reduced by half in the last year, to just 26 out of 148 councils.
- MS nurses statistic is taken from The MS Society Sharepoint database, accurate as of 30 April 2011. The figure is based on 220 known MS specialist nurses for an estimated 100,000 people with MS in the UK. This is in line with the UK MS Specialist Nursing Association (UKMSSNA)
- GPs - An MS Society report in 2008 found that 30 per cent of GPs reported a lack of confidence in identifying potential MS patients. Source: MS: The patient journey, read more: http://www.mssociety.org.uk/downloads/MS_-_the_patient_journey.f930b842.pdf
- The MS Society (www.mssociety.org.uk) is the UKs largest charity dedicated to supporting everyone whose life is touched by multiple sclerosis (MS), providing an award-winning freephone helpline (0808 800 8000), specialist MS nurses and funding more than 80 vital MS research projects in the UK.
- MS is the most common disabling neurological condition affecting young adults and an estimated 100,000 people in the UK have MS.
- MS is the result of damage to myelin - the protective sheath surrounding nerve fibres of the central nervous system - which interferes with messages between the brain and the body.
- For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern.
- Symptoms range from loss of sight and mobility, fatigue, depression and cognitive problems. There is no cure and few effective treatments.
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