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July 2008 Off the Wire . . .



News Article 02raw

Personal Healthcare Budgets To Empower People With MS, UK

Main Category: Multiple Sclerosis
Article Date: 01 Jul 2008

On Monday 30 June, the final report of Lord Darzi's review of the NHS will be published and will talk of an NHS that "empowers patients" through care that is "high quality and personal".

Lord Darzi will announce the piloting of personalised budgets in healthcare, following successes in social care.

The MS Society is a key stakeholder in the review process and MS has been named as a condition that would benefit from personal healthcare budgets.

Simon Gillespie, Chief Executive of the MS Society, said: "The emphasis on personal budgets and patient empowerment means this report represents a great opportunity to give people with multiple sclerosis (MS) access to the care they need when they need it and in the most appropriate way.

"MS is a fluctuating and complex condition and people's needs change from week to week. Putting people at the heart of planning and delivery of their own healthcare should lead to a better quality of life overall and encourage greater independence, as we have seen when personalised social care has worked.

"The extension of personal budgets must not, however, be seen as an end in itself. This is a necessary step in the process of giving people with disabilities maximum control over their lives, and over the care and support they need."

The Government has also laid out plans to speed up the National Institute of Clinical Excellence (NICE) drug delivery process.

The MS Society has twice challenged NICE over its assessment of MS drugs, first over the beta interferons and glatiramer acetate and last year over natalizumab. In the first case, the Department of Health set up a risk sharing scheme to make the drugs available outside of the NICE framework. In the second case, NICE revised its opinion on appeal.

Chief executive Simon Gillespie said: "This is good news for people with conditions like MS, who are keen to see effective new treatments made available as quickly as possible.

"The MS Society has had several bruising encounters with NICE over MS drugs and while it's right that the NHS keeps a close eye on costs, two years is far too long to wait if you have an incurable condition and can see yourself getting worse.

"There are still issues that NICE needs to address - the lack of transparency in their methods, the significant number of drugs that haven't been assessed - but this is definitely a step in the right direction."

Multiple sclerosis is the most common disabling neurological disorder affecting young adults and an estimated 85,000 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.

The MS Society is the UK's largest charity dedicated to supporting everyone whose life is touched by MS, providing respite care, an award-winning freephone helpline (0808 800 8000), specialist MS nurses and funds around 40 vital MS research projects in the UK.

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