The Right to a Full Life

MS Society Cymru Manifesto for the Welsh General Election

MS factsMultiple sclerosis (MS) is a condition of the central nervous system. No one knows what causes MS, but with over 4,000 people living with the condition in Wales – and three new people diagnosed every week – it is one of the most common neurological conditions affecting young adults in the Wales today.

MS is an autoimmune condition. It causes the immune system, which normally helps to fight off infections, to attack the protective sheath surrounding nerve fibres of the central nervous system (brain and spinal cord). The damage this causes stops messages between the brain and the body being transmitted properly.

Most people with MS are diagnosed with relapsing remitting MS. Symptoms arrive unexpectedly (a relapse) and are followed by periods of improvement (remission). For nearly all people with MS, this is how their MS begins.

Each person’s experience of MS is unique. Symptoms may include loss of sight and mobility, pain and numbness, slurred speech, loss of balance, depression, fatigue and cognitive problems. MS can, in some cases, lead to severe and permanent disability.

The causes of MS remain unknown. It is not possible to predict who will be affected or when. We do know, however, that three times as many women as men are affected, and most people are diagnosed during their 20s and 30s – at a key stage of their working and family lives.

MS is a complex and unpredictable long term condition. There is no cure and treatments that are available are effective in only certain cases for some of the time. A recent study concluded that the cost of MS in Wales is £67 million a year, approximately £17,000 per person with the condition, and this study excluded the cost of loss of income.

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MS Society Cymru Manifesto

People with MS can have different symptoms at different times and although some are very common, there is no typical pattern that can be applied to everyone.

I have a

right to...a full life!

MS Society Cymru Manifesto

IntroductionPeople affected by MS have the right to live life to the full.We should strive for a health and social care system that works for people living with MS, which is flexible and inspires independence, where new medicines and treatments are evaluated and approved in Wales, and where individuals know their rights.

MS Society Cymru calls upon the Welsh Government to work with the voluntary sector to deliver on the rights of every person with MS to world-class healthcare, to independence, and to support to live a full life. Our Welsh General Election manifesto presents an ambitious set of proposals designed to achieve this vision.

Please help us to beat MS.

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Building a social care system based on the rights of service users

Developing a combined health and social care system

Expanding the use of direct payments, making this the default way of organising social care packages and allowing people to purchase wheelchairs and other specialist equipment.

People living with MS want to elect a government that is prepared to take big decisions and develop ambitious, distinctive policies for Wales. Regardless of what happens in England, MS Society Cymru thinks the Welsh Government should reform the social care system, developing a universal system that everyone would pay into and which would support the social care needs of all those who needed it, not only those who are over the age of 65.

Since 2007 the National Assembly for Wales has used its new powers to pass an average of six laws a year, slowly creating a distinct body of Welsh law. A new law on social care charges will allow the Welsh Government to cap home care charges at £50 a week from April 2011, whilst the Carers Strategies Measure 2010 will offer carers a far greater role in the development of services.

The challenge for the next government, whichever parties form it, will be to use the new law making powers to continue to improve the lives of its citizens. For people with MS, this manifesto represents a blue print for how these new powers could be used to improve their lives, including:

Judi RhysCyfarwyddwr/Director MS Society Cymru

MS Society Cymru Manifesto

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HealthcareHigh quality, specialist and responsive healthcare and access to the right medicines are essential to help the 4,000 people with MS manage their condition. Since 1999 the range of treatments available for treating MS has expanded rapidly, whilst the MS Teams have grown from one specialist nurse to dedicated MS teams in Newport, Cardiff, Swansea and North Wales.

Over the last four years, the Welsh NHS has undergone huge changes with the scrapping of prescription charges, the dissolution of the internal market in health, and the restructuring of Health Commission Wales.

Access to MedicinesDrugs that help in the fight against MS are improving: it is expected that there will be more than 10 drug options by the end of 2011. However, prescribing levels for MS disease modifying drugs in Wales are among the very lowest in Europe. Action must be taken now to ensure equity of access to the right drug for the right person at the right time. Continued investment in research is also crucial to ensure that MS treatments continue to improve until we eventually find a cure.

The process of getting new drugs and treatments approved in Wales is confusing and

Our stories – fighting for access to MS drugsIan Williams from Pontypool helped to organise a local campaign to get access to Mitroxantrone, a drug designed for fighting cancer that can be used to help tackle some of the symptoms of MS.

He was first diagnosed in 2000 and was prescribed Disease Modifying Drugs, but they did not improve his condition and after every relapse, his condition worsened. Ian finished work in 2004, his MS went into freefall and he had several stays in hospital trying different drugs. In

is in need of reform. The All Wales Medicines Strategy Group (AWMSG) can approve treatments for use in Wales as an ‘interim’ measure before the treatments are reviewed by the National Institute for Clinical Excellence (NICE). Since its inception NICE has approved funding for new MS drugs and set clinical guidelines, but it can not be right that decisions to approve treatments in Wales by the Minister for Health and the AWMSG can be overturned by NICE.

Breaking the barrier between health and social careWhilst the recent restructuring

MS Society Cymru Manifesto

The Welsh Government has encouraged Local Authorities and Health Boards to work together through Local Service Boards and through joint appointments, but the fundamental divides between healthcare and social care remain. However, this is not the case in other parts of the UK – for example since the 1970s, social services have been delivered this way in Northern Ireland.

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of the old 22 LHBs and 8 NHS Trusts into 7 Health Boards was widely welcomed by service users and charities alike, one of the consequences has been to break the link between the 22 LHBs and the 22 local authorities that is important in tackling delayed transfers of care, and getting people out of hospital and into social care.

We CAll on the Welsh Government to ensure that every person with MS has access to the drugs they need.

We CAll on the Welsh Government to transfer responsibility for social services from local authorities to the 7 Health Boards, creating Health and Social Service Boards.

We CAll on the Welsh Government to support and endorse the role of the MS specialists and to ensure that people living anywhere in Wales can access a Specialist MS Nurse.

We CAll on the Welsh Government to implement the recommendations of the Neurosciences Review ensuring that everyone living with MS can access Occupational Therapists, Physiotherapists and other rehabilitation services.

We CAll on the Welsh Government to invest in palliative care and hospices services in both the public and voluntary sector, so that these services can be accessed locally.

We CAll on the Welsh Government to introduce legislation to reform the All Wales Medicines Strategy Group (AWMSG) by transferring the responsibility for reviewing new medications and issuing Clinical Guidance from the National Institute for Clinical Excellence (NICE) to it. The new body, Medicines Wales-Meddyginiaethau Cymru would have the same powers as the Scottish Medicines Consortium.

We CAll on this new body, once established, to review the 2003 NICE guidelines for MS and update them for a Welsh context.

2005 his consultant said there were some trials in the USA on a new drug called Mitroxantrone, however there was no funding available, so his Consultant Neurologist could not prescribe it.

“I needed to do something,” Ian said, “My MS was progressive and the treatment options were getting fewer.”

Ian worked with others in his local branch and ran a campaign locally calling on the Welsh Government to fund the treatment. He contacted Assembly Members, MPs, working with his local newspaper, the South Wales Argus, and eventually the funding was provided, benefiting dozens of people in South East Wales alone.

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MS Society Cymru Manifesto

IndependencePeople with MS have the right to take control of their lives as full citizens. Independent living is about self-determination, equal opportunities and self-respect. Radical changes are needed to the current system to realise this vision by providing high quality care, support and equipment.

Personalised care and supportThe Welsh Government has an immediate responsibility to address the lack of funding and huge inequalities in care and support services across the country.

Any future social care system must mean an end to the postcode lottery of services, ensure portability and consistency of needs assessments, provide high quality information, advice, advocacy and brokerage for all who need it, and provide flexible, responsive and personalised care and support.

Citizen Directed Support offers a real opportunity for people with MS to control the services they receive according to their needs. It is essential that high quality advice, information, advocacy and brokerage services are available to support people to make the best use of their funds, and to take on all of the additional responsibilities of managing their own care.

A social care system based on rightsAt present recent changes to the health and social care system in Wales have focused on directing organisations to change their working practices, charges and how they consult service users, but the emphasis has been on Government directing other elements of the public sector to change. MS Society Cymru believes that Wales needs a new approach.

People living with MS and other conditions should have care packages built around their individual needs, rather than one based on the capacity and resources of their local authority. Therefore the next government must give legal status to the rights of service users and carers, so that individuals are empowered to design their care package and spend any money allocated to them, as they see fit.

enabling equipment and wheelchairsWheelchairs can be an essential part of maintaining a person’s independence. The Welsh

Government launched a review of wheelchair services in 2008, but in the meantime, some people with MS have been forced to wait several years for a suitable wheelchair.

From simple aids to daily living, community equipment can have a major impact on a person’s quality of life and independence. But despite their importance, many people with MS face lengthy waiting times for the simple equipment and adaptations they need to live their lives. Improving access to public transportMany people living with MS and other conditions find that they can be completely excluded from public transport. Whilst in the cities and large towns the vast majority of buses are modern and are “low floor”, and large railway stations are generally accessible, 50% of railway stations are inaccessible, most are unstaffed and have no accessible toilets.

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MS Society Cymru Manifesto

We CAll on the Welsh Government to introduce a Bill of Rights for Social Care, implementing the recommendations of the Social Care Constitution for Wales. The Bill of Rights for Social Care will contain the rights of service users, carers and social care staff.

We CAll on the Welsh Government to reform the Unified Assessment process, creating a single assessment standard across the country to end the postcode lottery of a person with MS being assessed as having substantial needs in one county and only moderate needs in another.

We CAll on the Welsh Government to reform the direct payments system to empower everyone to design their own care package and employ who they want to support them, unless they decide to opt for a care package managed by the local authority.

We CAll on the Welsh Government to reform the wheelchair service and give more choice to service users. To achieve this we would like to see:- Responsibility given to the individual Health Boards for

assessing service users for specialist equipment in Wales.- Legislation introducing direct payments for healthcare,

allowing service users to purchase their own wheelchair.

We CAll on the Welsh Government to ensure that Health Boards provide timely and responsive access to community equipment and assistive technology, like FES, enabling people with MS to stay mobile and independent for longer.

We CAll on the Welsh Government to draw up an action plan to make 95% of railway stations accessible to people using wheelchairs and ensure that 75% have wheelchair accessible toilets by 2020.

We CAll on the Welsh Government to work with Local Authorities and bus operators to establish Quality Bus Partnerships that require the use of modern, low floor, accessible buses.

Our stories – Improving access to public transport Seema Day has been campaigning with her local MS branch to raise awareness about the difficulties people with MS have accessing public transport. Seema lives in Wrexham and was first diagnosed with MS in 1994. In 2003 she first started to use a wheelchair and a scooter, and soon realised just how difficult it was to use public transport.

“If you want to use public transport, you have no independence,” Seema said. “As a wheelchair user, I have to research ahead and make sure that if I use the train, the destination station is accessible, and that when I come back, the lifts at Wrexham General are still operating.”

Seema wants the next Welsh Government to invest more in improving disabled access at railway stations and to encourage councils to work with bus companies, so that modern low floor vehicles are used.

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MS Society Cymru Manifesto

However the proposals were closely linked with the Green Paper proposals in England, which have not been implemented since the change in Government. MS Society Cymru would like to see the next Welsh Government publish a White Paper proposing practical solutions to funding social care using the powers available to the National Assembly for Wales.

A reformed social care systemAt the end of 2009, the Welsh Government published a Green Paper containing options for how social care could be funded in the future. The Green Paper proposed four options: taxation, a partnership model, an insurance model and a compulsory levy.

SupportThe current model for delivering social care is flawed and is badly in need of reform. The challenge for the next Welsh Government will be to develop a sustainable model of care that supports any disabled person who needs it, regardless of age. The average age of diagnosis for people with MS is between 20 and 40, and they might need support in their 30s, 40s and beyond.

Support for carersFriends and family members should not be expected to compromise their own full and active lives because they have chosen to support someone. The unpredictable, often progressive, and incurable nature of MS means that the difficulties faced by carers are particularly significant. Carers need appropriate respite, but this

Our stories – Carers need support to carry on caringRichard Gau from Haverfordwest knows the importance of support for carers. His wife Dawn was diagnosed with MS in 1991 and he is now her full time carer.

Richard is never daunted by the challenges posed by Dawn’s condition. The couples’ life is busy and without compromise, both socially and in the vast and valuable work they undertake for the MS Society in their roles as Chairman (Richard) and Support Officer (Dawn) for the Pembrokeshire local branch.

But Richard would not be able to care for Dawn unless he had support to take a break. “We have crossroads come to the house during

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the week to sit with Dawn”. This makes life so much easier for me, and allows me to have a break,” said Richard.

He does not think Carers get the recognition and support they should be getting from councils and health boards. He said, “If I was not here, who would look after Dawn?” It is far too easy for councils to assume that someone living with MS does not need support if they have a husband or wife, who can care for them.

We CAll on the Welsh Government to establish a National Social Care Authority to manage a National Care Fund funded by a new levy on Council Tax. A 10-15% precept on Council Tax would raise £100-150 million to fund free personal care for everyone who needed it, regardless of age.

We CAll on the Welsh Government to give the proposed National Social Care Authority the power to change the size of the levy according to the demands for social care in a particular year. Local Authorities would have responsibility for collecting the Social Care Precept as they currently do so with the Police Precept

We CAll on the Welsh Government to bring forward legislation to implement the recommendations of the Law Commission’s consultation on Adult Social Care.

We CAll on the Welsh Government to reform respite care provision, so that individuals can have the freedom to go on short breaks to accessible holiday destinations with the support of personal assistants, or fund suitable care in their homes, so that family member carers can recharge their batteries and have a break.

We CAll on the Welsh Government to review the Disabled Facilities Grant scheme with a view to reducing regional differences between different local authorities and making more people eligible for the scheme.

is only possible if the person they care for, can access high quality care in an appropriate setting.

Fit for purpose homesPeople living with multiple sclerosis should be supported to live in their homes if their condition worsens. In 2009 local authorities spent £34 million on Disabled Facilities Grants making minor or substantial adaptations

to thousands of homes to improve accessibility. If someone living with MS is using a powered wheelchair they might look for a grant to install a downstairs “wet room”, adapt the kitchen to lower the work surfaces or to install a stair lift.

However the present system has huge regional variations and is assessed on household

income. In some local authorities individuals might only be eligible for a grant for a small percentage of the work, meaning they have to find the rest of funding from family, friends or the voluntary sector.

MS Society Cymru Manifesto

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MS Society Cymru Manifesto

People with MS deserve the right to a full life, but this means that further improvements are needed in the following areas:

1. Healthcare: quality and specialist healthcare throughout life including access to the right drugs and treatments.

2. Independence: personalised care and support, a bill of rights

for social care, and wheelchairs and enabling equipment. 3. Support: a reformed social care system funded by a social

care levy, support to remain in their homes, and support for carers.

Continued improvements will require strong leadership from the next Minister for Health and Social Services. In particular he or she will need to finish implementing the review of Adult Neurosciences, so that people living with MS can access a sustainable health service based at specialist centres in Cardiff, Swansea and the Walton Centre.

The next Welsh Government has the power to make fundamental changes to the health and social service system, improving the lives of people living with MS. After 12 years of devolution and 4 years of having a degree of law making powers, it is time to use these powers to take bold steps, make distinct Welsh laws, and finally solve the problem of “how do we pay for care in Wales?”

Finally in order to take these bold steps we call on the Welsh Government to establish a Law Commission for Wales to continue to review the law in devolved areas, such as Health, Social Care and Local Government.

ConclusionMS Society Cymru remains committed to working with all parties, those which form the next Welsh Government, and those which form the opposition, to ensure that the calls contained within this Manifesto are acted upon.

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MS Society Cymru Manifesto

Support the MS Society Cymru ManifestoIt doesn’t matter who you are or what your interest may be in MS – we can all do something to support the MS Society Cymru Manifesto.

For more information about how you can support the MS Society Cymru Manifesto visit: www.mssociety.org.uk/wales

Find out how the MS Society is working to support the goals in this Manifesto, both nationally and locally by signing up to the Welsh Policy and Campaigns Network at: www.mssociety.org.uk/wales.

Talk to us about what the MS Society Cymru Manifesto means to you. Get in touch by telephone: 029 2078 6676 or e-mail:mscymru@mssociety.org.uk.

Thank you for your support.

About MS Society CymruThe MS Society is the UK’s largest charity for people living with MS, with 40,000 members and over 320 local branches including 16 in Wales. We provide grants to individuals, for home adaptations for example, and to public sector organisations to co-fund specialist nursing posts. The MS Society is the UK’s largest funder of research into MS.”

www.mssociety.org.uk/wales

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MS Society Cymru Manifesto

MS Society CymruTemple CourtCathedral RoadCardiff CF11 9HA029 2078 6676

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© MS SocietyPublished August 2010

The Multiple Sclerosis Society of Great Britain and Northern Ireland is a charityregistered in England and Wales (207495) and Scotland (SC0 16433)