MS Society Cymru Manifesto for the Welsh General Election. The Right to a Full Life

Size: px
Start display at page:

Download "MS Society Cymru Manifesto for the Welsh General Election. The Right to a Full Life"

Transcription

1 MS Society Cymru Manifesto for the Welsh General Election The Right to a Full Life

2 MS facts Multiple 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. 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! 2

3 Introduction People 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. 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: 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. 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. Judi Rhys Cyfarwyddwr/Director MS Society Cymru 3

4 Healthcare High 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 Medicines Drugs 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 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 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 care Whilst the recent restructuring Our stories fighting for access to MS drugs Ian 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 4

5 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. 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. We call on the Welsh Government to ensure that every person with MS has access to the drugs they need 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. 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. 5

6 Independence People 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 support The 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. 6 A social care system based on rights At 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 wheelchairs Wheelchairs 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 transport Many 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.

7 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 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. 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 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. 7

8 Our stories Carers need support to carry on caring Richard 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. Support The 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. 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 A reformed social care system At 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. 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. Support for carers Friends 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 8

9 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 million to fund free personal care for everyone who needed it, regardless of age. 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 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 homes People 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. 9

10 Conclusion MS 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. 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. 10

11 Support the MS Society Cymru Manifesto It 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: 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: Talk to us about what the MS Society Cymru Manifesto means to you. Get in touch by telephone: or mscymru@mssociety.org.uk. Thank you for your support. About MS Society Cymru The 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. 11

12 MS Society Cymru Temple Court Cathedral Road Cardiff CF11 9HA MS Society Scotland Ratho Park 88 Glasgow Road Ratho Station Newbridge EH28 8PP MS Society Northern Ireland The Resource Centre 34 Annadale Avenue Belfast BT7 3JJ MS Society MS National Centre 372 Edgware Road London NW2 6ND Helpline The Multiple Sclerosis Society of Great Britain and Northern Ireland is a charity registered in England and Wales (207495) and Scotland (SC ) 12 MS Society Published August 2010

The MS Society Manifesto. I have a right to... a full life!

The MS Society Manifesto. I have a right to... a full life! The MS Society Manifesto I have a right to... a full life! MS facts Multiple sclerosis (MS) is a condition of the central nervous system. No one knows what causes MS, but with around 100,000 people living

More information

A new value-based approach to the pricing of branded medicines. Submission from the MS Society March 2011

A new value-based approach to the pricing of branded medicines. Submission from the MS Society March 2011 A new value-based approach to the pricing of branded medicines About multiple sclerosis Submission from the MS Society March 2011 Multiple sclerosis (MS) is one of the most common disabling neurological

More information

First edition December 2008 Revised November 2010. What is primary progressive MS?

First edition December 2008 Revised November 2010. What is primary progressive MS? First edition December 2008 Revised November 2010 What is primary progressive MS? This booklet is available in large print and audio CD. For either of these formats, contact the MS Society UK Information

More information

First edition December 2008 Revised January 2011. What is secondary progressive MS?

First edition December 2008 Revised January 2011. What is secondary progressive MS? First edition December 2008 Revised January 2011 What is secondary progressive MS? This booklet is available in large print and audio CD. For either of these formats, contact the MS Society UK Information

More information

Multiple Sclerosis & MS Ireland Media Fact Sheet

Multiple Sclerosis & MS Ireland Media Fact Sheet Multiple Sclerosis & MS Ireland Media Fact Sheet This fact sheets gives a summary of the main facts and issues relating to Multiple Sclerosis and gives an overview of the services offered by MS Ireland.

More information

What is relapsing remitting

What is relapsing remitting First edition December 2008 What is relapsing remitting MS? This booklet is available in large print and audio CD. For either of these formats, contact the MS Society UK Information Team:020 8438 0799

More information

Second edition July 2009. Caring for someone with MS: a handbook for family and friends

Second edition July 2009. Caring for someone with MS: a handbook for family and friends Second edition July 2009 Caring for someone with MS: a handbook for family and friends Written by Joanna Ridley, edited by James Bailey and Sarah Westlake. With thanks to all those working with and affected

More information

Voting for your top research questions Survey

Voting for your top research questions Survey MS Priority Setting Partnership Voting for your top research questions Survey Prioritising important research questions for multiple sclerosis a partnership between people affected by MS and healthcare

More information

Grants For People With MS - Case Study

Grants For People With MS - Case Study C1: The Individual Support Grant Fund In this section: Aims of the fund Fund criteria Statutory funding Examples of statutory funding Grant categories The application process Aims of the fund The Individual

More information

How to Get Your MS Medicine Campaigning Words Out loudly

How to Get Your MS Medicine Campaigning Words Out loudly How to campaign for... Access to MS medicines in Northern Ireland 1 3 Foreword 4 Introduction 5 About MS medicines Reliable and independent information about MS medicines MS medicines approved for use

More information

Submission to the National Disability Insurance Scheme inquiry into accommodation for people with disabilities and the NDIS

Submission to the National Disability Insurance Scheme inquiry into accommodation for people with disabilities and the NDIS MULTIPLE SCLEROSIS AUSTRALIA Submission to the National Disability Insurance Scheme inquiry into accommodation for people with disabilities and the NDIS 17 February 2016 Deidre Mackechnie Chief Executive

More information

MS Essentials. Vision and MS. This booklet is available in a larger print and audio CD Call 020 8438 0799 or email shop@mssociety.org.

MS Essentials. Vision and MS. This booklet is available in a larger print and audio CD Call 020 8438 0799 or email shop@mssociety.org. Third edition August 2013 05 MS Essentials For people living with MS This booklet is available in a larger print and audio CD Call 020 8438 0799 or email shop@mssociety.org.uk Vision and MS Contents 02

More information

Teriflunomide (Aubagio)

Teriflunomide (Aubagio) Teriflunomide (Aubagio) Spirella Building, Letchworth, SG6 4ET 01462 476700 www.mstrust.org.uk reg charity no. 1088353 We hope you find the information in this factsheet helpful. If you would like to speak

More information

Treating symptoms. An introduction to. Everyone diagnosed with MS can get treatment for their symptoms. The symptoms of MS. Who can get treatment?

Treating symptoms. An introduction to. Everyone diagnosed with MS can get treatment for their symptoms. The symptoms of MS. Who can get treatment? Everyone diagnosed with MS can get treatment for their symptoms This resource is an introduction to the treatments that are available. The symbol will point you to further resources. An introduction to

More information

Relapsing remitting MS

Relapsing remitting MS An introduction to Relapsing remitting MS What does it mean when you are diagnosed with relapsing remitting MS? There are three main types of MS: relapsing remitting MS, primary progressive MS and secondary

More information

What is Multiple Sclerosis? Gener al information

What is Multiple Sclerosis? Gener al information What is Multiple Sclerosis? Gener al information Kim, diagnosed in 1986 What is MS? Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (brain and spinal

More information

Accommodation after stroke

Accommodation after stroke Stroke Helpline: 0303 3033 100 Website: stroke.org.uk Accommodation after stroke After a stroke, your current home may no longer be the best place for you to get the care and support you need, and you

More information

Plan for Independent Living

Plan for Independent Living Easy Read Plan for Independent Living Supporting disabled people to have an independent life September 2013 This is an Easy Read version of Framework for Action on Independent Living How to use this document

More information

A life like any other?

A life like any other? A life like any other? Human Rights and Adults with Learning Disabilities An Easy Read Summary of a Report by the Joint Committee on Human Rights What is in this booklet Page 1. Introduction 1 2. What

More information

Policy Briefing. Health Structures in Ireland, North and South

Policy Briefing. Health Structures in Ireland, North and South Policy Briefing This document aims to inform ageing research and add to existing discussion on policy and research developments. Health Structures in Ireland, North and South This document outlines the

More information

Understanding. Multiple Sclerosis. Tim, diagnosed in 2004.

Understanding. Multiple Sclerosis. Tim, diagnosed in 2004. Understanding Multiple Sclerosis Tim, diagnosed in 2004. What Is Multiple Sclerosis? Multiple sclerosis (MS) is a neurologic disorder that affects the central nervous system (CNS). The CNS includes the

More information

Charity number 222377 (England, Northern Ireland and Wales); SCO41079 (Scotland)

Charity number 222377 (England, Northern Ireland and Wales); SCO41079 (Scotland) Charity number 222377 (England, Northern Ireland and Wales); SCO41079 (Scotland) Cardiff Law School Law in the Real World Applying for a place at a specialist further education college: A guide for Young

More information

Information Pack. Marketing Communications Executive. Based at. MS Ireland National Office 80 Northumberland Road Dublin 4

Information Pack. Marketing Communications Executive. Based at. MS Ireland National Office 80 Northumberland Road Dublin 4 Information Pack Marketing Communications Executive Based at MS Ireland National Office 80 Northumberland Road Dublin 4 Page 1 MS Ireland Background MS Ireland is the only national organisation working

More information

Welsh Government. Consultation Summary of Responses Report. Legislative Changes affecting Ambulance Services in Wales

Welsh Government. Consultation Summary of Responses Report. Legislative Changes affecting Ambulance Services in Wales Welsh Government Consultation Summary of Responses Report Legislative Changes affecting Ambulance Services in Wales February 2014 Digital ISBN 978 1 4734 1031 2 Crown copyright 2014 WG21186 Contents Page

More information

For people living with MS. Managing a relapse

For people living with MS. Managing a relapse 01 MS Third edition September 2009 Revised May 2011 Essentials For people living with MS Managing a relapse Contents 2 About this booklet 3 What is a relapse? 3 How do I know if I am having a relapse?

More information

Use of oral steroids in Multiple Sclerosis

Use of oral steroids in Multiple Sclerosis Use of oral steroids in Multiple Sclerosis Information for patients and carers Neurology Department Aberdeen Royal Infirmary What are steroids? The steroids used to treat Multiple Sclerosis (MS) relapses

More information

What is hospice care? Answering questions about hospice care

What is hospice care? Answering questions about hospice care What is hospice care? Answering questions about hospice care Introduction If you, or someone close to you, have a life-limiting or terminal illness, you may have questions about the care you can get and

More information

Using the TUC Manifesto for Disability Equality. A guide for trade union activists

Using the TUC Manifesto for Disability Equality. A guide for trade union activists Using the TUC Manifesto for Disability Equality A guide for trade union activists Section one Why a manifesto? Trade unions campaign for a better future for all. The TUC s new Manifesto for Disability

More information

An unnatural death. A report into investigations of mesothelioma death and their impact on bereaved families

An unnatural death. A report into investigations of mesothelioma death and their impact on bereaved families An unnatural death A report into investigations of mesothelioma death and their impact on bereaved families 08458 50 50 20 enquiries@blf-uk.org www.lunguk.org 1 Contents p.3p.3executive summary p.4p.3background

More information

NICE: REHABILITATION AFTER STROKE GUIDELINE. Sue Thelwell Stroke Services Co-ordinator UHCW NHS Trust

NICE: REHABILITATION AFTER STROKE GUIDELINE. Sue Thelwell Stroke Services Co-ordinator UHCW NHS Trust NICE: REHABILITATION AFTER STROKE GUIDELINE Sue Thelwell Stroke Services Co-ordinator UHCW NHS Trust Content About me! NICE Rehabilitation after Stroke to include background, remit and scope, guideline

More information

Intermediate care and reablement

Intermediate care and reablement Factsheet 76 May 2015 About this factsheet This factsheet explains intermediate care, a term that includes reablement. It consists of a range of integrated services that can be offered on a short term

More information

Guide to Private Medical Insurance

Guide to Private Medical Insurance Guide to Private Medical Insurance Contents About the Exeter 4 Why private medical insurance? 5 Product highlights 6 Cover and benefits 10 Getting the right premium 15 How to apply 16 Claims overview 21

More information

drug treatment in england: the road to recovery

drug treatment in england: the road to recovery The use of illegal drugs in England is declining; people who need help to overcome drug dependency are getting it quicker; and more are completing their treatment and recovering drug treatment in ENGlaND:

More information

Life with MS: Mastering Early Treatment

Life with MS: Mastering Early Treatment Life with MS: Mastering Early Treatment Essential Information About MS Multiple sclerosis (MS) is a disease that attacks the central nervous system (CNS). Approximately 2.5 million people worldwide and

More information

Appointment of Executive Director, Services and Support

Appointment of Executive Director, Services and Support Appointment of Executive Director, Services and Support 1 Executive summary More than 100,000 people live with multiple sclerosis (MS) in the UK. Every one of them shares the uncertainty of life with MS.

More information

Understanding Relapse in Multiple Sclerosis. A guide for people with MS and their families

Understanding Relapse in Multiple Sclerosis. A guide for people with MS and their families Understanding Relapse in Multiple Sclerosis A guide for people with MS and their families Introduction You have been given this booklet because you have been diagnosed with Multiple Sclerosis (MS) and

More information

What is Mesothelioma? Mesothelioma is a cancer of the lining of the lung or the abdomen caused by asbestos.

What is Mesothelioma? Mesothelioma is a cancer of the lining of the lung or the abdomen caused by asbestos. 1 Report for: Health and Wellbeing Scrutiny Commission Meeting Date: 29 th October 2015 Subject: Mesothelioma UK Charitable Trust From: Ghislaine Boyd, Business Development Manager, Mesothelioma UK Charitable

More information

Jelf Employee Benefits White Paper on Cancer

Jelf Employee Benefits White Paper on Cancer Jelf Employee Benefits White Paper on Cancer Edition 1, September 2013 Wellbeing at Work Cancer, covered. 250,000 people are diagnosed with cancer in England every year** Cancer Research UK states that

More information

Occupational therapy after stroke

Occupational therapy after stroke Stroke Helpline: 0303 3033 100 Website: stroke.org.uk Occupational therapy after stroke After a stroke, you are likely to need help to regain your abilities, learn new skills and cope with any remaining

More information

INNOVATIVE 5-STAR SERIOUS ILLNESS COVER

INNOVATIVE 5-STAR SERIOUS ILLNESS COVER INNOVATIVE 5-STAR SERIOUS ILLNESS COVER FROM VITALITYLIFE VITALITY.CO.UK/LIFE YOU RE UP TO TWICE 1 AS LIKELY TO GET A PAYOUT FROM OUR SERIOUS ILLNESS COVER THAN YOU ARE FROM A TYPICAL CRITICAL ILLNESS

More information

Understanding Relapse in Multiple Sclerosis

Understanding Relapse in Multiple Sclerosis Understanding Relapse in Multiple Sclerosis A guide for people with MS and their families Introduction Relapses are very common in MS and largely unpredictable in terms of how often they occur, how severe

More information

The DEMENTIA MANIFESTO. for LONDON

The DEMENTIA MANIFESTO. for LONDON The DEMENTIA MANIFESTO for LONDON Less than half of people with dementia feel part of their community. 2 3 Dementia is the biggest health and social care challenge facing London today. It s the most feared

More information

Understanding your Tecfidera treatment

Understanding your Tecfidera treatment Understanding your Tecfidera treatment Information for patients who have been prescribed treatment with Tecfidera. (dimethyl fumarate) Contents About Multiple Sclerosis (MS) What is MS? Symptoms of MS

More information

Understanding your Tecfidera treatment

Understanding your Tecfidera treatment Understanding your Tecfidera treatment Information for patients who have been prescribed treatment with Tecfidera. (dimethyl fumarate) Contents About Multiple Sclerosis (MS) What is MS? Symptoms of MS

More information

About MS. An introduction to. An introduction to multiple sclerosis for people who have recently been diagnosed. What is MS? Is it common?

About MS. An introduction to. An introduction to multiple sclerosis for people who have recently been diagnosed. What is MS? Is it common? An introduction to multiple sclerosis for people who have recently been diagnosed When you have just been diagnosed with multiple sclerosis, you will probably have many questions about the condition and

More information

Submission to the Senate inquiry into out-of-pocket costs in Australian healthcare

Submission to the Senate inquiry into out-of-pocket costs in Australian healthcare MULTIPLE SCLEROSIS AUSTRALIA Submission to the Senate inquiry into out-of-pocket costs in Australian healthcare 15 May 2014 Debra Cerasa Chief Executive Officer Multiple Sclerosis Australia ABN 51 008

More information

Help with council tax bills

Help with council tax bills Information for families UK Help with council tax bills For families with disabled children Introduction This guide is about the different schemes that exist for reducing your council tax bill. It is written

More information

Spinal Cord Injuries: An introduction to claiming compensation

Spinal Cord Injuries: An introduction to claiming compensation Spinal Cord Injuries: An introduction to claiming compensation Today, I m getting on with moving forward in my life in a variety of ways and I m grateful for how Thompsons have helped with it all. Mark

More information

REHABILITATION MEDICINE by PROFESSOR ANTHONY WARD

REHABILITATION MEDICINE by PROFESSOR ANTHONY WARD REHABILITATION MEDICINE by PROFESSOR ANTHONY WARD What is Rehabilitation Medicine? Rehabilitation Medicine (RM) is the medical specialty with rehabilitation as its primary strategy. It provides services

More information

The 2015 Challenge for NHS Wales. A briefing for General Election candidates on the challenges facing the healthcare system in Wales

The 2015 Challenge for NHS Wales. A briefing for General Election candidates on the challenges facing the healthcare system in Wales The 2015 Challenge for NHS Wales A briefing for General Election candidates on the challenges facing the healthcare system in Wales Introduction Across the UK health is a devolved matter with all four

More information

A Route Map to the 2020 Vision for Health and Social Care

A Route Map to the 2020 Vision for Health and Social Care A Route Map to the 2020 Vision for Health and Social Care 02 A Route Map to the 2020 Vision for Health and Social Care Introduction This paper sets out a new and accelerated focus on a number of priority

More information

Rehabilitation Medicine Service for Adults with Physical Disabilities

Rehabilitation Medicine Service for Adults with Physical Disabilities Rehabilitation Medicine Service for Adults with Physical Disabilities Information for Professionals Rehabilitation Medicine Service Community & Therapy Services Group This leaflet has been designed to

More information

To: Interested Parties. Our reference: MLX 310 Date: 2 August 2004. Dear Sir/Madam

To: Interested Parties. Our reference: MLX 310 Date: 2 August 2004. Dear Sir/Madam To: Interested Parties 020 7084 2642 020 7084 2121 anne.thyer@mhra.gsi.gov.uk Our reference: MLX 310 Date: 2 August 2004 Dear Sir/Madam PROPOSALS TO ENABLE THE USE OF ELECTRONIC SIGNATURES ON PRESCRIPTIONS

More information

Aspire Housing. A temporary home while long-term accommodation is being arranged

Aspire Housing. A temporary home while long-term accommodation is being arranged Aspire Housing A temporary home while long-term accommodation is being arranged About Aspire Incurring a spinal cord injury can be life changing, but you can still lead a full and rewarding life. Over

More information

If you have Parkinson s, you may find that you are struggling to pay

If you have Parkinson s, you may find that you are struggling to pay Work, money and practical matters Help with Council Tax If you have Parkinson s, you may find that you are struggling to pay your Council Tax. But there is some financial support available, so it s important

More information

A Health and Wellbeing Strategy for Bexley Listening to you, working for you

A Health and Wellbeing Strategy for Bexley Listening to you, working for you A Health and Wellbeing Strategy for Bexley Listening to you, working for you www.bexley.gov.uk Introduction FOREWORD Health and wellbeing is everybody s business, and our joint aim is to improve the health

More information

Lymphoma and palliative care services

Lymphoma and palliative care services Produced 2010 Next revision due 2012 Lymphoma and palliative care services Introduction Despite improvements in treatment, many people with lymphoma will not be cured. Death and dying are things that people

More information

Xxxxxxxxxxxxxxxxxxxxx. A guide for adult patients receiving Proton Beam Therapy abroad. Adult PBT Guide 2013 1

Xxxxxxxxxxxxxxxxxxxxx. A guide for adult patients receiving Proton Beam Therapy abroad. Adult PBT Guide 2013 1 Xxxxxxxxxxxxxxxxxxxxx A guide for adult patients receiving Proton Beam Therapy abroad Adult PBT Guide 2013 1 Contents Proton Beam Therapy explained (P4) What is Radiotherapy? What is Proton Beam Therapy?

More information

CBT IN THE CITY. adjusted to the news of being with MS? April 2013. Experts at your fingertips call now. Check out our new services in you local area

CBT IN THE CITY. adjusted to the news of being with MS? April 2013. Experts at your fingertips call now. Check out our new services in you local area April 2013 Experts at your fingertips call now CBT IN THE CITY Check out our new services in you local area contents. A message from Susie, Information Multiple Sclerosis CBT can make a difference on the

More information

Managed Clinical Neuromuscular Networks

Managed Clinical Neuromuscular Networks Managed Clinical Neuromuscular Networks Registered Charity No. 205395 and Scottish Registered Charity No. SC039445 The case for Managed Clinical Neuromuscular Networks 1. Executive summary Muscular Dystrophy

More information

Health Services in the UK

Health Services in the UK Health Services in the UK For general health advice, there are many resources available, both on and offline. A vast amount of information, including a 'Health A-Z', 'Medical Dictionary' and 'Symptom Checker'

More information

MS Essentials. 08 (s) Getting the best from social work services in. Scotland

MS Essentials. 08 (s) Getting the best from social work services in. Scotland Second edition December 2009 Scotland 08 (s) MS Essentials For people living with MS Getting the best from social work services in Scotland This publication is available in large print (22 point) Call

More information

Equitable Choice. Ensuring affordability and accessibility to drug therapies

Equitable Choice. Ensuring affordability and accessibility to drug therapies Equitable Choice Ensuring affordability and accessibility to drug therapies Equitable Choice - Ensuring affordability & accessibility to drug therapies Equitable Choice: Ensuring affordability and accessibility

More information

Breast cancer and travel insurance Factsheet. This factsheet suggests some points to bear in mind when you are looking for travel insurance.

Breast cancer and travel insurance Factsheet. This factsheet suggests some points to bear in mind when you are looking for travel insurance. Breast cancer and travel insurance Factsheet This factsheet suggests some points to bear in mind when you are looking for travel insurance. 02 Introduction Breast cancer and travel insurance 03 Some people

More information

Community Multiple Sclerosis Team Patient Information Leaflet

Community Multiple Sclerosis Team Patient Information Leaflet Community Multiple Sclerosis Team Patient Information Leaflet Shining a light on the future Introduction We hope this leaflet will provide you with information that you will find useful when attending

More information

Guideline scope Workplace health: support for employees with disabilities and long-term conditions

Guideline scope Workplace health: support for employees with disabilities and long-term conditions NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE Guideline scope Workplace health: support for employees with disabilities and long-term conditions Short title Workplace health: employees with disabilities

More information

AUBMC Multiple Sclerosis Center

AUBMC Multiple Sclerosis Center AUBMC Multiple Sclerosis Center 1 AUBMC Multiple Sclerosis Center The vision of the American University of Beirut Medical Center (AUBMC) is to be the leading academic medical center in Lebanon and the

More information

MS Essentials. Insurance and MS. This publication is available in large print (22 point) Call 020 8438 0799 or email infoteam@mssociety.org.

MS Essentials. Insurance and MS. This publication is available in large print (22 point) Call 020 8438 0799 or email infoteam@mssociety.org. Sixth edition April 2011 03 MS Essentials For people living with MS This publication is available in large print (22 point) Call 020 8438 0799 or email infoteam@mssociety.org.uk Insurance and MS Multiple

More information

PRIVATE MEDICAL INSURANCE BUSINESS HEALTHCARE AND CORPORATE HEALTHCARE

PRIVATE MEDICAL INSURANCE BUSINESS HEALTHCARE AND CORPORATE HEALTHCARE MORATORIUM APPLICATION FORM PRIVATE MEDICAL INSURANCE BUSINESS HEALTHCARE AND CORPORATE HEALTHCARE For employees (new business and mid-term joiners) and addition of dependants to apply for VitalityHealth

More information

Life with MS: Mastering Relationships with Family and Friends

Life with MS: Mastering Relationships with Family and Friends Life with MS: Mastering Relationships with Family and Friends Getting the Support You Need The bonds we have with friends and family are linked to our happiness and well-being. They bring us joy during

More information

MS IN EUROPE Overview of the

MS IN EUROPE Overview of the CHANGING THE LANDSCAPE OF MS IN EUROPE Overview of the EMSP 2015-2020 Strategic Plan The Voice of People Living with MS in Europe The European Multiple Sclerosis Platform (EMSP) exists to improve the quality

More information

What is vascular dementia?

What is vascular dementia? alzheimers.org.uk What is vascular dementia? Vascular dementia is the second most common form of dementia after Alzheimer s disease. It is caused by problems in the supply of blood to the brain. This factsheet

More information

Parkinson s UK policy statement Prescription charges

Parkinson s UK policy statement Prescription charges Parkinson s UK policy statement Prescription charges "My drugs are my lifeline. Without them I would have no movement at all I would be sitting in my house, looking out the window - unable to dress, wash,

More information

Drug treatments for neuropathic pain

Drug treatments for neuropathic pain Understanding NICE guidance Information for people who use NHS services Drug treatments for neuropathic pain NICE clinical guidelines advise the NHS on caring for people with specific conditions or diseases

More information

Hospital discharge arrangements in Wales

Hospital discharge arrangements in Wales Factsheet 37w May 2012 Hospital discharge arrangements in Wales About this factsheet This factsheet explains how your discharge from hospital should be managed following NHS treatment so that you receive

More information

Six Month Pilot Analysis: Improving Rehabilitation for Men with Prostate Cancer in North East London

Six Month Pilot Analysis: Improving Rehabilitation for Men with Prostate Cancer in North East London Six Month Pilot Analysis: Improving Rehabilitation for Men with Prostate Cancer in North East London June 2015 Helen Whitney (Physiotherapist and Prostate Cancer Project Lead) Thufayel Islam (Prostate

More information

ADULT HEALTH AND WELLBEING LONG-TERM NEUROLOGICAL CONDITIONS

ADULT HEALTH AND WELLBEING LONG-TERM NEUROLOGICAL CONDITIONS ADULT HEALTH AND WELLBEING LONG-TERM NEUROLOGICAL CONDITIONS i. Summary The National Service Framework for long-term neurological conditions categorises neurological conditions as: Sudden-onset conditions

More information

PREVENT TRANSFORM CURE

PREVENT TRANSFORM CURE PREVENT TRANSFORM CURE The Arthritis Research UK Manifesto 2 Prevent, Transform, Cure The Manifesto ABOUT US Arthritis Research UK is the charity dedicated to stopping the devastating impact that arthritis

More information

Neurorehabilitation Strategy Briefing Document and Position Paper

Neurorehabilitation Strategy Briefing Document and Position Paper Neurorehabilitation Strategy Briefing Document and Position Paper Background What is neurorehabilitation? The World Health Organisation defines neurorehabilitation as: A problem-solving process in which

More information

Information Pathway. The emotional impact of a myeloma diagnosis. Coping with a diagnosis of myeloma

Information Pathway. The emotional impact of a myeloma diagnosis. Coping with a diagnosis of myeloma Information Pathway Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JG Tel: + 44 (0) 131 557 3332 Fax: + 44 (0) 131 557 9785 Myeloma Infoline 0800 980 3332 www.myeloma.org.uk Charity No. SC

More information

Mencap s briefing on the draft care and support bill

Mencap s briefing on the draft care and support bill Mencap s briefing on the draft care and support bill Mencap is the UK s leading learning disability charity, working with people with a learning disability, their families and carers. We want a world where

More information

Printed for the Scottish Government by RR Donnelly B55529 03/08

Printed for the Scottish Government by RR Donnelly B55529 03/08 THINKING ABOUT care MOVING INTO A home? THINKING ABOUT care MOVING INTO A home? Crown copyright 2005 ISBN 0 7559 4472 0 Scottish Government St Andrew s House Edinburgh EH1 3DG Printed for the Scottish

More information

Supporting people with learning disabilities to take care of their breasts - a guide for supporters. Your breasts, your health

Supporting people with learning disabilities to take care of their breasts - a guide for supporters. Your breasts, your health Supporting people with learning disabilities to take care of their breasts - a guide for supporters Your breasts, your health 1 Why be breast aware? We hope this booklet will help you assist the person

More information

If you have Parkinson s, or care for someone who does, you may have

If you have Parkinson s, or care for someone who does, you may have Work, Symptoms money and and practical lifestyle matters General information about benefits If you have Parkinson s, or care for someone who does, you may have some concerns about how you will manage financially.

More information

Applying for Personal Independence Payment (PIP)

Applying for Personal Independence Payment (PIP) Applying for Personal Independence Payment (PIP) This booklet has two aims: 1. To help you navigate the application process for Personal Independence Payment (PIP) by providing information and advice.

More information

factsheet Help with Council Tax

factsheet Help with Council Tax factsheet Help with Council Tax 2015/16 carersuk.org factsheet This factsheet looks at what help is available for council tax and what to do if you disagree with a council tax decision. The information

More information

Information for Adults with Physical Disabilities and Long Term Neurological Conditions

Information for Adults with Physical Disabilities and Long Term Neurological Conditions Information for Adults with Physical Disabilities and Long Term Neurological Conditions Rehabilitation Medicine Service Community & Therapy Services Directorate of Operations This leaflet has been designed

More information

a quick introduction to parkinson s

a quick introduction to parkinson s a quick introduction to parkinson s if you have just been diagnosed or know somebody who has, you ve probably got a lot of questions and perhaps some worries. That s where Parkinson s UK can help. We re

More information

NHS funding and expenditure

NHS funding and expenditure NHS funding and expenditure Standard Note: SN/SG/ Last updated: April Author: Rachael Harker, Social and General Statistics Expenditure on the NHS has risen rapidly and consistently since it was established

More information

Choosing the Right Healthcare Providers. general information

Choosing the Right Healthcare Providers. general information Choosing the Right Healthcare Providers general information MS is a life-long disease, which makes it critical for you to feel comfortable with your MS healthcare providers and work in partnership with

More information

Guide for families with children receiving Proton Beam Therapy abroad

Guide for families with children receiving Proton Beam Therapy abroad Xxxxxxxxxxxxxxxxxxxxx Guide for families with children receiving Proton Beam Therapy abroad Paediatric PBT Guide 2013 1 Contents Proton Beam Therapy explained (P4) What is radiotherapy? What is Proton

More information

This guide is about how you can help people with a learning disability register to vote and vote

This guide is about how you can help people with a learning disability register to vote and vote Easy Read Guide x to voting in the European Union referendum This guide is about how you can help people with a learning disability register to vote and vote Easy read 2 The European Union Referendum An

More information

An easy to read guide to the Disability Discrimination Act

An easy to read guide to the Disability Discrimination Act An easy to read guide to the Disability Discrimination Act Introduction The Disability Discrimination Act is a law to help disabled people. It says disabled people must be treated fairly. The law also

More information

Hospital discharge arrangements

Hospital discharge arrangements Factsheet 37 May 2015 About this factsheet This factsheet explains how your discharge should be managed following NHS treatment so you receive the help you need in the most appropriate location. Depending

More information

Teriflunomide (Aubagio) 14mg once daily tablet

Teriflunomide (Aubagio) 14mg once daily tablet Teriflunomide (Aubagio) 14mg once daily tablet Exceptional healthcare, personally delivered Your Consultant Neurologist has suggested that you may benefit from treatment with Teriflunomide. The decision

More information

Body, Brain and Tissue Donation Pack

Body, Brain and Tissue Donation Pack Body, Brain and Tissue Donation Pack Information on donating your body, brain or tissue for anatomical examination, research or education and training Contents 3 Donation and the Human Tissue Authority

More information

Position statement on the education and training of health care assistants (HCAs)

Position statement on the education and training of health care assistants (HCAs) Position statement on the education and training of 1 of health care care assistants (HCAs) Introduction This document provides commissioners, education providers and employers with guidance on best practice

More information

A Guide to the Human Rights Act

A Guide to the Human Rights Act A Guide to the Human Rights Act A booklet for People with Learning Disabilities Human Rights Human Rights Illustrations by CHANGE Picture Bank What s inside This booklet,..................................1

More information

Occupational therapy and arthritis. Therapy Occupational therapy and arthritis

Occupational therapy and arthritis. Therapy Occupational therapy and arthritis Therapy Occupational therapy and arthritis Occupational therapy and arthritis This booklet provides information and answers to your questions about this therapy. What is occupational therapy? Occupational

More information