Simon Gillespie - MS Society

ePolitix.com speaks to Simon Gillespie, chief executive of the MS Society about MS Week and raising the profile of multiple sclerosis.

Question: This week is MS Week: what is the purpose of this week?

Simon Gillespie: MS Week gives people affected by multiple sclerosis the opportunity to raise their profile in the public eye for one special week in the year. Although many people have heard of MS, few understand the complex, unpredictable, and potentially debilitating effects of the UK's most common neurological condition affecting young adults. MS week aims to generally raise awareness and understanding of the condition.

Question: The MS Society is hosting a parliamentary reception on the afternoon of Wednesday April 23. What do you hope to achieve at this event?

Simon Gillespie: MS Week is our opportunity to engage in the government's planned reforms of social care. Tens of thousands of people with MS depend on social care services for help with every day tasks, such as dressing and shopping.

Social care services are being transformed, to give people more control over their own care. With the right support, this will benefit millions of adults with long-term conditions, including people with MS. But these positive developments are masking failings in the system.

People with proven needs are denied care, are missing out on the care they are entitled to and are subject to a postcode lottery of access and provision. And it's not just us saying this; the Commission for Social Care Inspection says the same.

But few of these problems are new and rarely do they receive the public attention they deserve. We are taking this debate forward by calling for a constitution for social care.

Question: What would a social care constitution achieve?

Simon Gillespie: We are calling for a social care constitution, akin to the pending NHS constitution, as a way of debating publicly what social care is for, and what people are entitled to. There is widespread agreement that a constitution for the NHS is a good thing – to guarantee patients' entailments. So we are asking: 'why not the same for social care?'

A social care constitution would set out what the system should look like, who would benefit and who would pay. It would clarify people's rights to self-directed care, including personal budgets, but also guarantee the support and choice people need to manage their care effectively.

The very act of debating the content of a social care constitution would draw attention to the issues of funding and rationing. If people are expected to pay toward the cost of their care, let's not duck the issue or hide it among the system's complexities. Let's instead debate this openly and ensure people know their entitlements.

Question: Care services minister Ivan Lewis recently pledged to review the eligibility criteria for social care. How are you engaging with this review?

Simon Gillespie: We welcome this long overdue review of the eligibility criteria, which increasingly excludes people with early care needs from most council-funded care. Helping people stay healthy is better for them and more cost effective for the government – yet the current system goes against this preventive ethos.

The question of eligibility for care services is one of the issues a social care constitution would address. Given this comparatively early diagnosis and the possible long-term care needs associated with MS, there is less opportunity for people to provide for their own care costs. Social care services should recognise the particular needs of adults with long-term conditions – self-funding is rarely an effective option.

Question: The Human Fertilisation and Embryology Bill has sparked a debate between many groups. Does the MS Society believe scientists should be allowed to use hybrid cells in stem cell research?

Simon Gillespie: The use of hybrid embryos is an important part of stem cell research. At the moment, there are limited options for scientists investigating the use of stem cells and as a result, their full potential is yet to be realised. Diseases such as MS, Parkinson's and Alzheimer's have a devastating impact on more than a million families throughout the UK; families to whom stem cell research could offer vital hope.

The benefits of embryo research will be discussed this week at a special meeting of the all party parliamentary group for MS.

Question: Where can readers of ePolitix.com find out more?

Simon Gillespie: Parliamentarians can attend the APPG for MS, which is on Wednesday April 23, 2008, at 3pm, in Committee Room 11. Immediately following that will be the reception, which is on the Terrace from 4-6pm.

Or you can find out more through our website www.mssociety.org.uk or by calling the policy and campaigns team on 020 8438 0700.