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    More news can be found in New Pathways Magazine, our bi-monthly publication, and also check daily at MSRC: Latest MS News

    New disability test 'is a complete mess', says expert

    HM Government LogoWelfare reform expert Professor Paul Gregg says a rushed roll out of the work capability assessment will cause more anguish

    One of the architects of the new sickness benefit system has warned it would be a mistake to start introducing it nationwide from the end of this month because of serious ongoing problems with the medical test designed to assess whether claimants are genuinely sick or disabled.

    "The test is badly malfunctioning. The current assessment is a complete mess," Professor Paul Gregg, an economist and welfare reform expert, said.

    During the preliminary roll-out of the test, people with terminal cancer, multiple sclerosis and serious mental illnesses have been found fit to work.

    Since early 2009, more than 240,000 cases contesting the result of the health tests have been accepted for tribunal hearings and, of the cases they hear, judges overturn about 40% of test findings.

    Over the next three years, 1.5 million people claiming incapacity benefit will undergo a work capability assessment (WCA) to determine whether they are eligible for a replacement benefit, employment support allowance (ESA).

    The new test is much tougher than the previous one and in pilots 30% fewer people have been found unfit for work and 70% fewer people have been found eligible for the full-rate, unconditional support benefit; in both cases claimants have been shifted to a lower benefit. The reform is expected to save the government £1bn over five years.

    The system has been in place for new claimants since 2008, but will be expanded to retest existing claimants from the end of this month.

    An independent review of the test in November last year found serious flaws in the way it was functioning and called for major improvements.

    Although the government has promised to implement these recommendations before people begin to be retested, at a rate of 11,000 a week, some politicians, charity workers and academics think the roll-out is going ahead too fast.

    Gregg, who helped design the new ESA, recommends a further trial before it is introduced nationally.

    "In the first trial, the system did not work. We need to trial the new, proposed, reformed system to check and prove that it works and avoids the serious stress and misclassification of people that we have already seen, before we start implementing it on a large and vulnerable population," he said. "The test so far has caused a huge amount of anguish to the people who have gone through it. We need to have something that is working accurately before we apply it nationally.

    "We shouldn't roll this out until we have something that is working."

    Stephen Timms, the shadow employment secretary, is also anxious about the speed with which it is being implemented. "In principle, this is the right thing to do," he said. "My worry is that this exercise is being rushed. We know that there are some changes that need to be made to the WCA. There are risks with the roll-out. I think that the government is in a rush with the welfare reform."

    Chris Grayling, the employment minister, acknowledged that there had been problems with the test, but said reforms were being introduced and would be in place in time. "I see this as a constant process of refinement and improvement," he said.

    Source: guardian.co.uk © Guardian News and Media Limited 2011 (24/02/11)

    Liberating the NHS: Improving outcomes for patients
    NHS LogoDetailed proposals for how the NHS will improve healthcare outcomes for patients and judge its success were set out in a public consultation by the Department of Health today.

    The publication, "Transparency in Outcomes - a framework for the NHS", is the first in a series of specific consultations to be published in the coming weeks seeking the views of healthcare professionals, the public and other interested parties on the detailed proposals. The consultation also marks the start of a series of visits and events that will take place across the country this summer to present and discuss our reform plans.

    The White Paper Equity and Excellence: Liberating the NHS, published on 12 July, explained the Government’s intention to create an NHS that is more responsive to patients’ needs and achieves better outcomes that are among the best in the world.

    Today’s publication proposes a new framework that aims to refocus the NHS on the outcomes achieved for patients rather than the process targets of the past that had no clinical justification.

    The framework includes a set of national outcome goals which patients and the public can use to judge the overall performance of the NHS and hold the Government to account for progress. The framework and the national outcome goals will form a combined mechanism by which the Secretary of State for Health can hold the new NHS Commissioning Board to account for the outcomes it is securing for patients.

    The consultation document suggests five outcome domains and seeks views on the structure and the core principles that should underpin the development of the framework, as well as the more specific outcome measures that should be used. The proposed domains are:

    Domain 1: Preventing people from dying prematurely

    Domain 2: Enhancing the quality of life for people with long-term conditions

    Domain 3: Helping people to recover from episodes of ill health or following injury

    Domain 4: Ensuring people have a positive experience of care

    Domain 5: Treating and caring for people in a safe environment and protecting them from avoidable harm

    Health Secretary Andrew Lansley said:

    "The White Paper set out the Government's vision for the NHS - a quality service that achieves health outcomes that are among the best in the world. I want to free doctors and nurses to focus on what really matters - better results for their patients - instead of them being stifled by top down targets.

    “Instead of politically motivated targets which lack clinical evidence, we will measure the outcomes that are most important to patients and that are relevant to healthcare professionals. These will be backed up by authoritative, evidence-based quality standards that will ensure everyone understands how those outcomes can be achieved.

    “I want to hear the views of healthcare professionals, patients, carers and the public on how the new system should work, and what we should measure to ensure the NHS is focussed on what is important to patients and what improves their overall experience of NHS care."

    Source: Department of Health (19/07/10)

    The NHS shake-up in England, how will it affect you?

    NHS LogoThe government is planning a major shake-up of the NHS system in England.

    GPs will be given much more responsibility for spending much of the budget, hospitals are to be set free from central control and an independent board will allow the service to escape political meddling.

    It has, unsurprisingly, been dubbed the most radical plan in the history of the NHS.

    Who is responsible for the budget now and how could that change?
     
    About 80% of the budget is held by local managers working for primary care trusts.

    There are 151 of these in England and they are effectively in charge of commissioning local services, such as hospitals, GPs, mental health units and community clinics.

    Ministers want to transfer much of that responsibility to GPs working in consortiums across the country.

    Both primary care trusts and regional bodies known as strategic health authorities are to be phased out over the next few years, with funding going directly to GPs.

    Has anything like this been tried before?
     
    Yes, although not quite on this scale. During the 1990s, the Tories created GP fundholding which allowed doctors to take charge of local budgets. Only half of them signed up in the end and the budget was limited to only the most basic parts of hospital care such as elective operations like knee and hip replacements.

    The latest model is far more wide-ranging.

    When Labour came to power, they scrapped fundholding, believing it had divided the profession. But within a few years ministers were launching their own version.

    This was called practice-based commissioning and encouraged GPs to work in partnership with neighbouring practices.

    However, many doctors said they have found it too bureaucratic and so it has not taken off across the country.

    Why does the government want to do it then?

    Health Secretary Andrew Lansley sees it as the key to making the NHS more responsive to patients.

    He believes GPs know what works best and wants to tap into their entrepreneurial spirit to drive improvement from the front-line.

    If it is successful, it may also help to save money. The NHS has been told to make up to £20bn of savings by 2014.

    Getting GPs to take on some management responsibility could help the health service cut the number of managers it employs.

    What do the experts think?
     
    The British Medical Association, the medical profession's trade union, has said it is "ready, willing and able" to meet the challenge.

    However, doubts do remain about whether there will be enough interest in every area to get effective consortiums of GPs set up across the country.

    It is also acknowledged that the policy is not without risks. Sceptics have questioned whether it is wise to give what are effectively independent businesses - GPs are not employees of the NHS in the same way other doctors are - such vast amounts of money.

    Some are also critical of the idea because they see it as unnecessary upheaval and reorganisation at a time when the NHS is under pressure to become more efficient.

    What about the independent board?
     
    The initiative has long been championed by the Tories. They have hailed it as a way of setting the NHS free from political interference.

    It is likely to be created from the current NHS management board which sits in the Department of Health and includes regional health chiefs.

    The board will be given responsibility for setting standards and holding GPs to account. It is also expected to take charge of paying for some services which are not being given to the GP consortiums. These include dentistry and specialist services such as paediatric intensive care, which are only done in the largest hospitals.

    In the future, the Department of Health could be renamed the Department of Public Health to concentrate on issues such as obesity and alcohol abuse.

    Are hospitals changing too?

    Yes, and potentially quite radically too. The White Paper talked about creating a "vibrant" industry of social enterprises.

    Key to this is getting all trusts to attain self-governing foundation trust status - nearly two thirds have so far.

    What is more, the cap on private income is to be lifted, allowing them to compete with private firms in a host of areas. This in itself is quite a significant step.

    But, what is more, the government has talked about hospitals going a step further and becoming employee-led bodies as the retailer John Lewis is.

    However, that would be complicated to achieve. For one thing, hospitals have considerable assets, such as buildings, which are owned by the state and would need to be bought. This would prove too expensive if they were valued at market prices.

    What changes will patients see?

    Visually, none. They will still walk through the doors of their local GP surgery and talk to the same staff they always do.

    However, if the government achieves its aim they may find themselves with more control over their care.

    Mr Lansley has said the reforms set out a vision for an NHS led by patients and professionals, not by politicians. He has said patients will be handed more choice over how and where they are treated.

    They can already choose which hospital they want to go to for non-emergency operations, such as knee and hip replacements.

    In the future, this choice is to be extended to GPs. Practice boundaries will be scrapped, enabling a patient to register with any family doctor they wish to.

    Patients have been promised more and clearer information. Central to this will be HealthWatch, a patient body which will collate information on performance and feedback from patients themselves.

    What happens now?

    The government says it will be carrying out a consultation, but it already seems to be in a hurry to get going.

    The White Paper includes a fairly detailed timescale for action.

    This year will see GPs start piloting the plans, before full roll out is completed by April 2013. The existing management structure - primary care trusts and strategic health authorities - is likely to be abolished within three years.

    All NHS trusts should gain foundation trust status by 2013 as well.

    What is the situation elsewhere in the UK?

    Health is a devolved power and as such the plans only affect England. None of the other countries have given responsibility to GPs on this scale.

    They have traditionally relied on more input from the medical profession for the management of local services.

    In Scotland, there are 14 health boards with doctors given senior roles.

    Wales has something similar following a restructuring last year which saw 22 health boards and local NHS trusts merged into seven larger health boards in charge of delivering and monitoring services.

    Northern Ireland has an integrated health and social care system with four boards in charge of monitoring the performance of NHS trusts.

    Source: BBC News © British Broadcasting Corporation 2010 (16/07/10)

    NHS 'to undergo radical overhaul'

    NHS LogoKey Changes

    *GPs - Asked to get together in groups to take on responsibility for spending much of the NHS budget

    *Hospitals - Encouraged to move outside the NHS to become "vibrant" industry of social enterprises

    *Patients - More information and choice, including ability to register with any GP they want to

    *Managers - Strategic health authorities and primary care trusts face the axe

    The NHS in England is to undergo a major restructuring in one of the biggest shake-ups in its history, the government has announced.

    Hospitals are to be moved out of the NHS to create a "vibrant" industry of social enterprises under the proposals.

    And, as expected, GPs are to take charge of much of the budget.

    The move will lead to the abolition of all 10 strategic health authorities and the 152 management bodies known as primary care trusts.

    The new structure will be held accountable by an independent NHS board which would be free from political interference, the government said.

    Meanwhile, responsibility for public health will be passed to local authorities.

    In many ways, the plans outlined in a White Paper go further than expected. The coalition agreement had promised no top-down reorganisations.

    But Health Secretary Andrew Lansley said he had decided to go further than first envisaged to rid the health service of "unnecessary" bureaucracy.

    He said the proposals would be challenging and turn the NHS "upside down" but in doing so help reduce management costs by nearly a half within four years.

    He added: "The government's ambition is for health outcomes - and quality services - that are among the best in the world."

    'Experiment'
     
    The GP move had long been championed by Mr Lansley - and in recent months the British Medical Association had indicated it was willing to work with him on the idea.

    The plans mean GPs working in groups will be in charge of a vast collection of hospital, mental health and community services - although specialist services and dentistry will not fall under their remit.

    Under the new system, the independent board will sit above as many as 500 consortiums of GPs to set standards and hold the groups to account.

    Another key aspect of the changes involves giving patients more information and choice. To achieve this, a new body, HealthWatch, will be set up to compile data on performance, while GP boundaries will be abolished to allow patients to register with any doctor they want.

    Mr Lansley also announced he expected all NHS trusts, which run hospitals and mental health units, to get foundation status by 2013.

    He also said he would be relaxing the rules which cap the amount of income a trust can make outside the NHS, opening the door to them seeing more private patients.

    He said this would allow them to innovate and widen the scope of what they did, but he also admitted it would mean those which were not financially viable could go under.

    The government will now consult on its plans before rolling them out over the next three years.

    Professor Chris Ham, chief executive of the King's Fund think-tank, said: "It is a very radical programme. We have never seen anything like this since the inception of the NHS in 1948."

    But he said the moves were not without risk, pointing out some GPs would not have the skills to manage the budget.

    Shadow health secretary Andy Burnham went further, describing the changes as a "political experiment".

    "It is a huge gamble with a NHS that is working well for patients."

    There was a mixed reaction from NHS staff. Unison said the changes could lead to "chaos", but the BMA said they could benefit patients and it was looking forward to working with ministers.

    Katherine Murphy, of the Patients Association, called for more clarity over how and what information would be provided to patients.

    "We need more details," she added.

    Source: BBC News © British Broadcasting Corporation 2010 (14/07/10)

    Queen’s Speech unveils new Health Bill

    NHS LogoQueen’s Speech unveils new Health Bill and vision for NHS

    The Queen has outlined the new coalition government’s plans for introducing a Health Bill that will cement its vision for a National Health Service run by clinicians and free from political meddling.

    Unveiling plans for the Health Bill in her speech to Lords and Members of the House of Commons earlier this week, Her Majesty said “the voice of patients and the role of doctors will be strengthened in the NHS to improve public health alongside actions to reduce health inequalities”.

    Broadly speaking, the Bill, to be put before parliament within the next 18 months, is designed to support a patient-led NHS that is focused on outcomes as well as deliver on the government’s commitment of slashing unnecessary bureaucracy, which it sees a major drain on resources.

    As previously announced, a flagship component of the Bill is the creation of an independent NHS Board that will take on responsibility for dishing out resources and providing commissioning guidance, as well as allow GPs to purchase services for their patients.

    Also under the plans, the role of the Care Quality Commission will be ramped up and Monitor will be assigned new powers as an economic regulator “to oversee aspects of access and competition in the NHS”, as a means of improving service efficiency.

    Furthermore, the Bill also takes forward the government’s intention to significantly trim the number of health quangos, in a bid to cut administration costs in the NHS by a third.

    According to the government, the Bill will foster a new environment for the NHS, one in which patients and clinicians will have a much greater say in the direction of services and care and one in which resource waste is eliminated, under the ultimate goal of achieving outcomes “that are amongst the best in the world”, said Health Secretary Andrew Lansley.

    According to Anna Dixon, Director of Policy at think-tank The King’s Fund, the Bill and other announcements in the Queen’s Speech “confirm that the NHS is embarking on a period of significant change”.

    “Strengthening the role of doctors and the voice of patients will create some difficult dilemmas,” she said, and added: “In setting up an independent NHS board, careful thought will need to be given to the relationship between its responsibilities and those of ministers, who will remain accountable to parliament for NHS expenditure”.

    GPs’ ‘critical’ role
    Dixon welcomed the government’s acknowledgement of the critical role played by family doctors within the NHS and that changes are essential to boosting the quality of general practice. “If, as expected, these changes include transferring budgets to GPs, it will be important to learn from the previous experiences of GP-led commissioning in the UK and other countries to ensure it delivers benefits for patients and efficiency savings across the health system while ensuring accountability for public expenditure,” she said.

    Also commenting on the Speech, Dean Arnold, head of the health care practice at Deloitte, said: “Putting patients first is always a positive thing to do, so too is empowering clinicians”. But he also warned that this requires “some caution as clinicians are not specialists in cost management – a skill that will increasingly be important as we seek to maximise the benefit received out of every pound spent on health”.

    Source: PharmaTimes (27/05/10)

    Free prescription plans 'on hold'

    Perscription MedicationsProposals to give free prescriptions to people in England with long-term conditions have been put on hold due to financial pressures on the NHS.

    Health minister Simon Burns said a decision on prescription charges and exemptions cannot be made before the spending review due in the autumn.

    Plans for expanding eligibility for free prescriptions were first announced by Gordon Brown in 2008.

    All charges have been scrapped in Wales and are being phased out in Scotland.

    In England, prescription charges for cancer patients have already been dropped.

    Professor Ian Gilmore, president of the Royal College of Physicians, was tasked with considering which patient groups should be exempt from charges and how the changes should be implemented.

    In a report first presented to ministers in November 2009, he said patients should be exempt if they have a long-term health condition that will persist for a period of at least six months.

    It means the three-year exemption would include people with common conditions, such as asthma, arthritis and high blood pressure, and eligibility would be determined by doctors.

    Prof Gilmore estimated the move would cost £430m a year.

    But he proposed phasing in the changes over a three-year period, to help spread the cost.

    His review concluded that the cost of the annual prescription pre‑payment certificate, which patients with chronic conditions can buy to help them manage the cost of prescriptions, should slowly be reduced.

    'Outdated'
     
    The current list of exemptions is "outdated and arbitrary", said Prof Gilmore.

    He added that it was disappointing that his review was not published or commented on by the previous government when the financial climate was more favourable.

    "I believe it still represents a useful way forward for exempting patients with long-term conditions from prescription charges.

    "Furthermore, the report outlines a way in which exemptions could be phased in the fairest way possible when the financial landscape allows it."

    A Department of Health spokesperson said they want people with long-term conditions to have more control over their health needs.

    "This is why we are focusing on prevention and the reform of long-term care as a whole to give patients better access to treatments that are personalised and effective for them as individuals."

    He added: "We know the NHS faces many challenges and therefore any decisions on future changes to the system of prescription charges and exemptions will be dependent on our future financial settlements."

    Neil Churchill, chair of the Prescription Charges Coalition and chief executive of Asthma UK, urged the government to outline how they intend to act on Prof Gilmore's report.

    "People with long-term conditions, such as arthritis, asthma, depression, heart disease, motor neurone disease, Multiple Scelrosis, Parkinson's and spina bifida will obviously be very disappointed to hear that a timetable to abolish prescription charges has not yet been set."

    Betty McBride, director of policy and communications, at the British Heart Foundation, said the report set out a roadmap for the government to phase out charges for people with long-term conditions without burdening the NHS with unaffordable extra costs.

    She added: "It's vital that heart patients continue to take prescribed medication to keep them healthy.

    "This is even more important in the current financial climate as preventative action avoids more costly medical treatment and hospital stays."

    Dr Hamish Meldrum, chair of the British Medical Association, said the current system is a mess and runs counter to the principle of an NHS that is free at the point of use.

    He added that charges should be abolished in England.

    "We really have to question whether the small financial benefit of retaining charges outweighs the many disadvantages of taxing the sick."

    Source: BBC News © British Broadcasting Corporation 2010 (27/05/10)

    Government pledge to overhaul social care in UK

    CaringCommission set up to examine the funding of long-term care will report within a year.

    Ministers today pledged to urgently overhaul Britain's "unsustainable" social care system and tackle a growing problem which the Labour government did little to address during its time in office.

    An independent commission is being set up to examine the funding of long-term care and will report within a year. Its job will be to devise a plan for a new system of paying for the personal care services which are needed because of Britain's increasingly elderly population.

    In a move which was widely welcomed by organisations representing older people, the coalition said that finding a new way of meeting the escalating costs of care was one of its main priorities.

    "Urgent reform of the social care system is at the top of our agenda", said Paul Burstow, the care service minister and Lib Dem MP. "The current system is unsustainable – it cannot go on as it is. Our first step is to establish an independent commission.

    "The Commission on Long Term care will be tasked with delivering a sustainable settlement, which is a fair partnership between the state and the individual," added Burstow. That remark suggests that taxpayers will have to pay at least some of the cost of whatever new system ultimately emerges, rather than the Government footing the entire bill. That is what previous studies, such as the 2005 one for the King's Fund health think-tank by ex-government adviser Sir Derek Wanless, have recommended.

    The charity Counsel & Care heralded the move as "a unique opportunity to co-ordinate sweeping reform of the care system and to propose ambitious changes that can last through future parliaments. Older people are desperate for a decision now on the future funding of care. Universal agreement has already been reached on the state of the current care system: it is unfair, underfunded and unsustainable," said Stephen Burke, its chief executive, who warned that the situation would get worse due to increasing demands from senior citizens and pressure on budgets. Once agreement on a new funding model had been reached ministers should set out a clear timetable of when changes would be made, he added.

    Michelle Mitchell, the charity director of Age UK, said: "The current care system is starved of funding, too few people receive services and the quality of care can be scandalous, so we urgently need to find new ways to improve quality and spreead the cost of care." Professor Chris Ham, chief executive of the King's Fund, said the commission "is a positive signal that social care reform will be among the coalition government's priorities. It is now more than a decade since the Royal Commission established by the last government reported. The challenge for the new commission is to set out a comprehensive blueprint for reform that commands support across the political spectrum". Legislation should be included in next year's Queen's Speech, Ham added.

    Ministers also announced plans to better integrate health and social care, increase direct payments for carers and extend personal budgets to older people and the disabled.

    Source: guardian.co.uk © Guardian News and Media Limited 2010 (24/05/10)

    New Government’s Plans For Access to Work

    UK Govenrment CrestThe government’s new approach to supporting disabled people at work could make it easier for employers to make the most of the talents of disabled people, according to Employers' Forum on Disability (EFD).

    The coalition government today (20 May) published its programme for government, which will see the reform of the Access to Work (AtW) programme so that disabled applicants can apply for jobs with funding already secured.

    Delivered by JobCentre Plus, AtW provides practical advice and support to disabled people and their employers to help remove barriers to finding and keeping a job.

    Susan Scott-Parker, chief executive of EFD, said: “This change of approach in Access to Work could be good news for both disabled employees and employers.

    “Any plans to reduce unemployment need to consider the needs of disabled people, who are more than twice as likely as non-disabled people to be out of work and claiming benefits.

    “This proposed change to Access to Work should give employers more confidence in recruiting disabled people, as well as giving disabled jobseekers more confidence when applying for work.

    “Both parties will know that the right workplace support is available, making it easier for disabled people to demonstrate their skills.

    “We look forward to working with our members and government partners to help ensure the Access to Work programme remains a success for both disabled people and employers.”

    The programme for government

    Other disability, customer and employment related policy announcements include:

    •    All existing welfare to work programmes will end and be replaced with a single welfare to work programme to help people back to work. Job Seeker’s Allowance claimants with the most significant barriers to work will be put on the new welfare to work programme immediately, rather than after 12 months.

    •    All current Employment Support Allowance (formerly Incapacity Benefit) claimants will be re-assessed for their readiness to work and potentially moved onto Job Seeker’s Allowance.

    •    Credit card companies will be obliged to provide better information to their customers in a uniform electronic format so consumers know whether they are getting the best deal

    •    The number and cost of quangos will significantly reduced.

    •    However, the Care Quality Commission’s role will be strengthened so it becomes a quality inspectorate.

    •    The right to request flexible working will be extended to all employees.

    •    Roll-out of personal budgets will be increased.

    •    Government procurement will be opened up and government ICT contracts will be published online.

    •    There will be better recording of hate crimes against disabled people, which is likely to involve some sort of central recording of data.

    •    There will be extra support for disabled people who want to be MPs, councillors or other elected officials.

    •    There will be a full Comprehensive Spending Review in Autumn 2010.

    About Employers' Forum on Disability

    Employers' Forum on Disability is the employers' organisation focused on disability as it affects employers and service providers. With over 400 members, EFD represents organisations that employ around 20 per cent of the UK workforce. In 2008 EFD launched the Business Taskforce on Accessible Technology (BTAT) because technology is excluding disabled employees, customers and citizens. BTAT's vision is that accessibility and usability for all will be fundamental to ICT. Since its establishment in 1991, EFD has worked closely with government and other stakeholders, sharing best practice to make it easier to employ disabled people and serve disabled customers.

    www.efd.org.uk

    Schoolboy’s petition prompts move on Multiple Sclerosis link to vitamin D

    Ryan McLaughlinAn international conference is to be held in Scotland to discuss the health effects of vitamin D — thanks to the efforts of a 14-year-old schoolboy.

    Ryan McLaughlin, from Glasgow, petitioned the Scottish Parliament questioning possible links between vitamin D and multiple sclerosis after discovering that the disease — from which his mother suffers — could be prevalent in Scotland because of vitamin D deficiency caused by a lack of sunlight.

    The petition called on ministers to produce guidelines on vitamin D supplements for children and pregnant women, and launch an awareness campaign. As a result of his efforts, the Scottish government recognised “an urgent need” to provide information to health professionals and mothers, and is to launch a campaign.

    Ministers also agreed to host a conference on April 27 to discuss the role of vitamin D. The event, to take place in Glasgow, will be opened by Nicola Sturgeon, the Health Secretary. Leading researchers into links between vitamin D deficiency and multiple sclerosis are expected to attend.

    Yesterday, as the Public Petitions Committee agreed to close Ryan’s petition, members congratulated him for his achievement. Bill Butler, Ryan’s local MSP, hailed the schoolboy’s effort, saying that “a very great deal of progress” had been made.

    The Glasgow Anniesland representative praised the way “Ryan and the McLaughlin family have persuaded the government; and the government has listened to the very sensible suggestions contained in the petition.

    “The government has agreed to a co-ordinated programme of action with NHS Scotland to produce guidance on vitamin D, to educate women on its importance, to consider different messages for different groups of people, and to ensure that health professionals are giving correct and consistent advice to pregnant women and new mothers. Not only should the McLaughlin family be congratulated, but also the government for listening.”

    He described that as a significant success. An image of Ryan is now featured on promotional literature for the petitions committee. Speaking about the campaign, Ryan said: “After an amazing year in raising both vitamin D and MS awareness, I now have the commitments that I wanted from the Scottish government.

    “I applaud the positive action taken by the Scottish government and the support from Deputy First Minister Nicola Sturgeon and Shona Robison, Health and Sports Minister.”

    A spokeswoman for the Scottish government said: “We’re keen to learn all we can about any possible links between vitamin D and multiple sclerosis and are keeping a very close eye on all the emerging evidence.”

    • Breast cancer is diagnosed more often in the spring and autumn, and less often in the summer, leading researchers to suggest that its season-ality may be connected to vitamin D deficiency. Researchers at the University of South Carolina, who examined 2,921,714 breast cancer cases, also found that the seasonality was increasingly prominent the further away from the equator that the women lived. This implies that lack of sunshine, and therefore vitamin D, was a factor.

    Source: Times Online Copyright 2010 Times Newspapers Ltd.(10/02/10)

    MP calls for abolition of the Multiple Sclerosis drugs risk-sharing scheme

    MS Disease Modifying DrugsThe Risk-sharing Scheme, the mechanism that makes disease modifying drugs for MS available on the NHS, was debated in Parliament on 2 February.

    James Gray MP, Chair of the All Party Parliamentary Group on MS, was very critical of the scheme and of the methodology and conclusions of the recently published two year analysis of the Scheme so far. In the light of the development of oral drugs for MS, he concluded by calling for the abolition of the Scheme.

    In reply, Health Minister Mike O'Brien drew attention to the reasons for setting up the Scheme and how it makes the disease modifying drugs available on the NHS. When asked about the new, oral drugs for MS, the minister reminded Mr Gray that these have yet to receive a licence and be assessed by NICE. But if they are recommended by NICE, the MS risk-sharing scheme will not detract from their appropriate use.

    Pam Macfarlane, Chief Executive of the MS Trust, said "This statement by Mr Gray must be very disappointing for the dedicated clinicians and the 4,900 people with MS who are currently being monitored and it must also be worrying for approximately 14,000 people currently receiving disease modifying drugs under the Scheme.

    "Until the oral drugs are licensed and widely adopted, we must ensure that people with MS can continue to have access to the therapies they need and do not end up re-living the problems of the 1990s with postcode prescribing and a lack of MS specialists and clinics."

    Source: MS Trust (09/02/10)

    Further Information

    Disease Modifying Drugs Risk Sharing Scheme

    Welsh government called upon to follow Scottish in vitamin D deficiency awareness

    Vitamin D
    The Welsh Assembly Government has been called upon to fund a campaign about vitamin D deficiency and multiple sclerosis.

    The MS Society Cymru is calling for ministers to follow Scotland’s lead and raise awareness about the links between the two.

    Such a campaign would encourage pregnant women and children under four to take a regular vitamin D supplement.

    Scientists recently discovered that MS could be prevented through daily vitamin D supplements.There is a clear link between vitamin D – known as the sunshine vitamin – and a gene that increases the risk of MS, raising the possibility that the debilitating auto-immune condition could be eradicated.

    The prevalence of MS is far higher in typically wet and cold countries such as Wales, where 110 people in every 100,000 are living with the condition.

    In a country with lots of sunshine – such as Brazil – only 18 people in every 100,000 have MS.

    The NHS in Scotland said it would raise awareness about the links between vitamin D deficiency and MS this month, after being spurred into acting by Glasgow teenager Ryan McLaughlin.

    Ryan’s mother, Kirsten, has had MS for three years, and Ryan, 14, has shown some symptoms of the disease but the family only discovered the link earlier this year after a family holiday.

    The teenager said: “I was shocked there had not been publicity around this before. We wanted there to be more awareness of the link and more research into how much of a problem it is in Scotland.“These actions will make a big difference – it will go a long way to giving children some protection against the disease and give parents proper advice.”

    Joseph Carter, spokesperson for MS Society Cymru, said: “We are delighted by this announcement by the Scottish Government and are now calling on the Welsh Assembly Government to do the same.“You are 10 times more likely to develop MS in Rhyl than you are Rio de Janeiro, and new research suggests this is due to vitamin D deficiency.”

    Vitamin D, obtained from foods and through the action of sunlight on skin, is essential for maintaining healthy bones.It is unclear exactly what causes MS but it has become increasingly evident that environmental and genetic factors play a role.

    Previous research has shown that populations from Northern Europe have an increased MS risk if they live in areas receiving less sunshine.This supports a direct link between deficiency in vitamin D, which is produced in the body through the action of sunlight, and increased risk of developing the condition.

    Researchers at the University of Oxford and the University of British Columbia this year discovered a direct relationship between the genetic variant DRB1*1501, which is associated with MS, and vitamin D.

    Dr Julian Knight, a co-author of the research, said: “In people with the DRB1 variant associated with MS, it seems that vitamin D may play a critical role.“If too little of the vitamin is available, the gene may not function properly.”

    And the study’s lead author Dr Sreeram Ramagopalan said: “Our study implies that taking vitamin D supplements during pregnancy and the early years may reduce the risk of a child developing MS in later life.”

    A spokeswoman for the Welsh Assembly Government said: “We are working closely with the MS Society to raise awareness of multiple sclerosis.“Earlier this year, we produced a leaflet, Multiple Sclerosis – living with a long term condition. This includes information on the condition, its symptoms and the people affected.”

    Source: Shine On Scotland (22/12/09)

    Schoolboy Ryan McLaughlin wins Multiple Sclerosis vitamin D campaign

    Ryan MvLaughlinPregnant women in Scotland are to be educated about the importance of taking vitamin D supplements thanks to a campaign by a 14-year-old Glasgow schoolboy.

    Ryan McLaughlin, whose mother Kirsten has Multiple Sclerosis, took his case to the Scottish Parliament's petitions committee earlier this year.

    He believes taking vitamin D can help prevent the condition.

    In a written response, the Scottish government said it would put in place an action plan to increase awareness.

    It said recent research had found there was an "urgent need" to provide information to all health professionals who work with pregnant women and young children about current guidance on vitamin D.

    "There is also a need to educate women about the importance of taking vitamin D supplement when pregnant and the importance of giving their children a vitamin D supplement until the age of four," the response added.

    The Scottish government will now agree a co-ordinated programme of action with NHS Health Scotland, and has pledged to keep the McLaughlins informed of developments.

    Mrs McLaughlin, a former European Taekwondo champion, was diagnosed with MS two years ago.

    Ryan, from Drumchapel, said: "I am so happy to hear that the Scottish government are being so proactive and really getting behind my campaign.

    "These actions will make a big difference to the health of generations of Scots, and it will go a long way to giving Scots children some protection against disease caused by vitamin D deficiency and gives parents proper advice.

    "I am now looking forward to the summit next year when we'll hopefully be able to tackle the recommended levels but this is such great news."

    Fortified milk

    Ryan became the face of a YouTube campaign to publicise the use of vitamin D, and led hundreds of supporters down Edinburgh's Royal Mile to Holyrood before he put his proposals to the petitions committee in June.

    He told MSPs research into the genetic effect of vitamin D deficiency showed a link to the development of MS. Vitamin D, which the body needs for healthy, strong bones is largely gained through sunlight and food.

    The Scottish government has already ruled out free vitamin D supplements for all pregnant and breastfeeding women, and said there were no plans to introduce the supplements in the form of fortified milk or other drinks at school.

    Scotland is thought to have the highest rate of MS in the world.

    Source: BBC News Scotland © British Broadcasting Corporation 2009 (05/12/09)

    Schoolboy campaigner backs MS vitamin D summit & wins support for campaign

    Ryan McLaughlinA major international summit on the links between multiple sclerosis and vitamin D deficiency, supported by the Scottish government, is to take place in Scotland early next year thanks to the efforts of a campaigning schoolboy.

    Ryan McLaughlin, 14, whose mother suffers from the disease, said yesterday he was delighted that that Ministers were backing an opportunity to explore the growing evidence that lack of the vitamin could be implicated in the high incidence of the disease.

    The summit will bring together government health advisers as well as researchers from Britain and countries such as Canada, where much work has been done on MS, and where supplementation of vitamin D is officially advocated in the general population.

    The Scottish conference will be organised by the MS Society and Shine on Scotland, Ryan’s group. News of the event follows a long campaign by The Times to highlight evidence that shortage of vitamin D, caused by Scotland’s lack of sunshine, could be linked to the country’s record for chronic ill health, including cancer, diabetes and heart disease.

    Yesterday, the petitions committee at Holyrood supported Ryan’s call for new guidelines on vitamin D supplements for pregnant women and young children, and agreed to take the issue forward.

    Alan McLaughlin, Ryan’s father, said he was “a little disappointed” the matter had not been referred to the health committee, but said the family was still confident that Parliament would carry out the inquiries into the disease which they sought.

    He said the family had had a meeting with Nicola Sturgeon, the Health Secretary, and Shona Robison, Minister for Public Health, and had been told that the government would also support a clinical trial in one of Scotland’s major cities to test pregnant women for their levels of vitamin D.

    The Scottish government told the campaigners in September that an awareness campaign highlighting the importance of vitamin D was under “active consideration,” and promised new guidelines on the use of the vitamin by children, pregnant and breastfeeding women.

    However, it ruled out free vitamin D supplements for all pregnant and breastfeeding women, and said there were no plans to introduce the supplements in the form of fortified milk or other drinks at school.Link

    In its response to Ryan’s petition, the government said it was fully committed to improving the understanding and treatment of MS, although it said much of the evidence of a link between vitamin D and the disease was at an early stage and further work was needed before any definitive clonclusions be drawn.

    Alan McLaughlin described the Government response as “very supportive” of their broad aims. He said that Ms Sturgeon had also been supportive of the idea of government funding for a clinical trial in a major Scottish city in which thousands of pregnant women would have their vitamin D levels taken, in order to determine the prevalence of deficiency. The research would be carried out by the University of Edinburgh.

    Mr McLaughlin pointed out that American scientists, meeting in Boston two weeks ago, have evaluated the feasibility of conducting what would be the largest clinical study ever undertaken to explore the role that vitamin D may play in MS.

    David McNiven, director of MS Society Scotland, said: “We have been asked to deliver the summit but we haven’t yet sat down and worked out the logistics of it. It will be early next year in Edinburgh.”

    A spokesman for the Scottish government said: “We’re keen to learn all we can about any possible links between Vitamin D and Multiple Sclerosis and are keeping a very close eye on all the emerging evidence.

    “During a very positive meeting with Shine On Scotland the Cabinet Secretary for Health and Wellbeing Nicola Sturgeon supported proposals to organise a summit on MS and its links to Vitamin D, details on this will be made available once plans are finalised.

    “Shine On Scotland also raised the possibility of applying for funding for a research project involving women who are pregnant. These proposals, once submitted, will be considered in the normal manner.”

    Source: TimesOnline Copyright 2009 Times Newspapers Ltd. (04/11/09)

    Disability living allowance remains

    Direct Gov LogoHealth Secretary Andy Burnham has ruled out scrapping a disability benefit paid to 2.5 million people to help fund a new National Care Service.

    Mr Burnham said he had "categorically" rejected the option of ending Disability Living Allowance, which is worth up to £119 a week to disabled people aged under 65 and costs the Government around £6 billion a year.

    But he left open the question of the future of Attendance Allowance, paid to over-65s who are physically or mentally disabled, saying that he was looking at ways to make the benefit "more progressive".

    A leading cancer charity said it was "deeply concerned" that AA remained under threat. But Mr Burnham pledged that no-one in receipt of disability benefits would lose out from the reforms.

    Prime Minister Gordon Brown told Labour's conference last month that the creation of a National Care Service would be a commitment in the party's election manifesto.

    Details have yet to be finalised of how it will be funded, and a green paper published in July suggested that benefits like DLA and AA could be "integrated" into the care system, leading to concerns among the disabled community that they may be abolished.

    But Mr Burnham told a conference in Harrogate that he wanted to "close down" controversy over DLA. He said: "We are still in a consultation period. No decisions have been made on funding options. We are still listening - about funding, about structures and about how to build a forward-looking system of care.

    "One avenue I do want to close down, however, is the debate and controversy over Disability Living Allowance. We recognise that this is an important benefit for disabled people, and I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.

    "This is because, whilst there will be increases in the numbers of disabled people of working age who need care, the majority of the people needing care in the future will be older people."

    Duleep Allirajah, policy manager at Macmillan Cancer Support, said: "Abolishing AA, as proposed in the Government's green paper, would leave many cancer patients over 65 unable to pay for the extra costs of disability, such as a special diet, higher fuel bills or travel to hospital."

    Source: Yahoo! News © 2009 Yahoo! All rights reserved (23/10/09)

    Obama signs Reeve bill on paralysis research

    President Obama and Matthew Reeve

    A new law named for "Superman" actor Christopher Reeve will coordinate research on paralysis and rehabilitation.

    President Barack Obama signed the Christopher and Dana Reeve Paralysis Act on Monday, one of several pieces of legislation along with a measure designed to expand wilderness protection. Lawmakers brought almost 170 bills for Obama to sign.

    The Reeve measure is intended to improve coordination of research and treatment for paralyzed persons and others with disabilities. The late Christopher Reeve became an advocate for embryonic stem-cell research after he was paralyzed in a 1995 horseback riding accident in Virginia. Reeve died in 2004 of heart failure.

    Obama said the new law "will connect the best minds and best practices from the best labs in the country and focus their endeavors through collaborative scientific research into the cure for paralysis, saving effort, money and, most importantly, time."

    The law designates the National Institutes of Health to coordinate research and work with other agencies and private groups to enhance paralysis research, rehabilitation and treatment programs.

    "Today is a day of progress for the millions of Americans who are living with paralysis and multiple sclerosis," said Sen. Tom Harkin, D-Iowa, a co-sponsor of the measure.

    The new law will help scientists "find ways to improve the lives of so many living with disabilities, bringing hope to those in need," Harkin said.

    Dana Reeve, Christopher Reeve's widow, died of lung cancer in 2006. Christopher Reeve's son, Matthew Reeve, attended the bill signing.

    Source: Kansascity.com (31/03/09)

    Multiple Sclerosis-ID consensus meeting in Brussels, 14 May 2009

    EU Flag

    In 2007 the European MS Platform organized a conference to launch the MSID project. The main objectives of this project, supported by the European Commission, were and still are: the analysis and comparison of MS data collection systems in Europe with the aim of developing and piloting a European Register on MS, and the activation of the European Code of Good Practice on the quality of life for MS patients.

    At the Consensus Meeting in May, the results of the research done in the framework of developing a European Register on MS will be presented, both from a medical and a statistical perspective. In the afternoon sessions there will be specific attention for the Code of Good Practice in MS and its role to raise the standards through Europe, the MS Barometer - EMSP's tool for making effective policy -, and for the added value of the MS-ID project in the context of the EU Public Health programme.

    The MS-ID project findings which will be presented at the Consensus Meeting and its outcome should contribute to an increased awareness across the EU on MS at political level, to a better understanding of the major inequalities of MS treatment and care across the European Union, as well as to the utilization of high quality comparable data on MS to positively impact the health policy in Europe so that citizens affected by MS can participate as full and equal citizens in society today.

    Source: European MS Platform (24/03/09)

    Hewitt seeking assisted suicide law change

    Debbie Purdy

    Former health secretary Patricia Hewitt is urging MPs to change the law to allow people to take terminally ill patients abroad for assisted suicide.

    The Labour MP has tabled an amendment to the Coroners and Justice Bill which would protect them from prosecution.

    The amendment which may be debated but not voted on at this stage, is not thought to have much chance of success.

    Care Not Killing, which opposes assisted suicide, said the effect of Ms Hewitt's amendment would be "tragic".

    BBC political correspondent Ben Wright said the government did not plan to change the law and the amendment, which has been signed by a handful of Labour, Conservative and Lib Dem MPs, was unlikely to pass.

    Purdy case

    More than 100 MPs have signed a Commons motion calling for the issue to be debated.

    Downing Street said that while Gordon Brown did not favour a change in the law, Labour MPs would be given a free vote if there was a division on Ms Hewitt's amendment next week.

    Ms Hewitt told the BBC she had been "troubled" by the issue for years and was aware more than 700 Britons were members of Dignitas and may choose an assisted suicide in future.

    She said her amendment was only "reinforcing the current prosecution policy".

    But if she got the chance in the future to introduce a private members' bill she would like a specific law to allow people who are terminally ill but "mentally competent" the choice of an assisted death.

    In October multiple sclerosis patient Debbie Purdy, from Bradford, West Yorkshire, lost a High Court case in which she tried to clarify the law on assisted suicide.

    She wanted a guarantee from the Director of Public Prosecutions (DPP) that her husband would not be prosecuted for murder if he assisted her death in Swiss euthanasia clinic Dignitas.

    No prosecutions

    But two senior judges ruled the current guidelines were adequate. The Appeal Court said it had to be Parliament which decided if the law should change.

    Since Dignitas opened in 1998, more than 100 British citizens have ended their lives in Switzerland, where it is legal to aid and abet a suicide, provided it has not been carried out for a profit.

    It is illegal in the UK and anyone convicted faces up to 14 years in prison.

    While there have been no prosecutions of relatives to date, the DPP has carried out investigations into cases.

    At the end of last year, the parents of 23-year-old Daniel James, who was paralysed in a rugby accident, were told they would not face charges over his death.

    He ended his life in Switzerland in September even though he was not terminally ill.

    'Quite clear'

    Director of Public Prosecutions Keir Starmer QC said while there was "sufficient evidence" to prosecute the couple, their "fiercely independent son" had not been influenced by his parents and so charging them would not be in the public interest.

    Liberal Democrat peer Lord Carlile said the current system should be left broadly as it is and the law was actually "quite clear".

    "There is a law against assisting suicide and there is also an important constitutional discretion which can be exercised so that a prosecution may not be brought if it is in the public interest not to bring it," he said.

    Making the law "prescriptive" would make using that discretion more difficult, he said.

    Sarah Wootton, chief executive of the Dignity in Dying group, said the Coroners Bill currently did not distinguish between types of suicide.

    "Clearly the law should protect vulnerable people from abuse, but at the same time it should not criminalise people who accompany those who make rational decisions to end their suffering," she said.

    But Peter Saunders, director of Care Not Killing, said while the government was trying to outlaw websites encouraging suicide, the effect of the amendment would be to encourage it.

    "The result would be a law that discouraged suicide with one hand and encouraged it with the other. That would be farcical as well as tragic," he said.

    Ms Hewitt's amendment has been signed by Conservative MPs Crispin Blunt and Richard Ottaway, Labour's Kevin Barron, James Plaskitt and Chris McCafferty and Lib Dem Evan Harris.

    Source: BBC News © British Broadcasting Corporation 2009 (21/03/09)

    EU red tape 'blocks drug trials'

    Clinal Trials

    Red tape is severely hampering clinical research in the UK and inadvertently "killing people", leading researchers have warned.

    European legislation introduced in 2004 has led to fewer patients enrolled in clinical trials and has caused "huge delays" in research, they said.

    NHS bureaucracy is a further hurdle to treatments being quickly assessed, a team of UK academics added.

    Regulators agreed there were some problems with interpreting EU rules.

    Despite increased funding in clinical trials in the UK, the number of trials being approved has stayed the same since 2004, when the European directive on clinical trials, designed to improve patient safety, came into force.

    Additional funding is being eaten up by paperwork, monitoring, and procedures such as detailed labelling of drugs, experts said.

    In 2002, 6% of trials worldwide were being done in the UK but in 2007 this was 2%.

    Professor Rory Collins, co-director of the Clinical Trial Service Unit at the University of Oxford, said there was a "tick box" mentality to carrying out trials which did not take into account how risky or not the research was.

    Trials of well-known and well-used treatments, such as aspirin, are being expected to jump unnecessarily through the same regulatory hoops, as new drugs.

    The regulations are being over-interpreted to cover people's backs, he added.

    Rules

    One international trial set up to assess treatments for head injury recruited 1,200 patients from the UK in a first stage done prior to 2004 but a second stage was hampered by issues of getting consent from unconscious patients in the UK where only 100 patients were signed up as a result.

    "If there's less activity, there's less evidence about how to treat patients safely, how to care for patients, how to save lives," said Professor Collins.

    "The hugely increased bureaucratic burden over the last several years has made it more difficult [to do trials] and inadvertently is killing people."

    Professor John Bell, president of the Academy of Medical Sciences, said clinical research was strong in the UK and was a vital part of the economy.

    But agreed there were "serious obstacles" maintaining its place as a world-leader.

    "The regulatory environment is much more complex and much more impeding than it was five years ago."

    Professor Richard Sullivan, King's College London, said at Cancer Research UK they had calculated it would take an 85% increase in investment just to keep "business as usual".

    He added that there were vast differences in how the clinical trials directive had been implemented in different countries which also made collaborating with other nations very difficult.

    Professor Kent Woods, chief executive of the Medicines and Healthcare Products Regulatory Agency (MHRA), said: "I don't think the situation is quite as bad as has been painted in that the number of clinical trials is steady."

    He added that there had been progress on reducing the amount of form filling in the UK but he agreed the system needed to be more flexible to take into account the risk of a particular trial.

    "There is an issue about how to risk-base research regulation, and it's something we're very keen to do."

    The EU clinical trials directive is due to be reviewed by the European Commission in 2010.

    "Extensive work is currently being carried out not only to boost the volume of clinical trials being conducted in the UK, but also the number of patients given the opportunity to participate in this research.

    "The challenge is to ensure the safety of patients and the integrity of the data as efficiently as possible."

    Source: BBC News © British Broadcasting Corporation 2009 (14/03/09)

    EU report shows low ratio of MS specialists

    EU Flag

    A European Union conference on Multiple Sclerosis being opened in Brussels this afternoon has highlighted the discrepancies in services, healthcare and research across Europe.

    At a news conference ahead of the European Multiple Sclerosis Platform, Ireland was criticised along with a number of other countries for having a very low neurologist to patient ratio.

    Multiple Sclerosis affects 500,000 people across Europe and has serious long term health, labour market, pension and therapy implications.

    But medical services and the daily support of MS patients varies widely.

    Figures presented this morning show that Ireland has just 16 neurologists for 10,000 patients.

    Sweden, which has 14,000 sufferers has 400 neurologists, while the Czech Republic with 13,000 sufferers has 335 neurologists.

    Ireland has only five neurological units compared to Finland, which has 40 units for 7,000 MS patients and Romania which has 72 units for 10,000 patients.

    Ireland is also among 11 European countries which has no pension fund for people with MS.

    Today's conference draws together scientists, national associations, the European Commission and Parliament with a view to setting out a code of practice for member states.

    The meeting will also look at how patients could have equal access to the best possible treatment. It will examine the latest and best therapies across Europe and also look at the economic costs to society as a whole of the prevalence of MS.

    Source: RTÉ News © RTÉ 2007(29/05/07)

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