Why We Need Your Help 3

MANIFESTO 2011 Campaign Pack

1 Contents

Why we need your help 3

What your MSP can do 4

Contacting your MSP 5

Contacting your Newspaper 9

Contacting your Health Board 10

Spreading the word 11

Resources

Template branch article 13

Template letter to MSP 14

Template letter to health board 15

Information

Making excellence the standard in healthcare 17

Putting people in control – self directed support 18

Putting people in control – peer-led programmes 19

Ensuring research is a priority 20

2 1. Why we need your help!

Your participation can make all the difference to the success of our campaigns. MSPs are there to serve you. Let them know that improving life for people with MS is something you feel passionate about and will be voting on. The run-up to the election next year is a perfect time to remind them of this!

The MS Society believes that everyone with MS should be entitled to high quality care and support to live their lives. However, huge inequalities exist across Scotland.

The manifesto focuses on three themes with a range of ‘asks’ on the next government:

 Excellent healthcare the standard: The Clinical Standards for Neurological Health Services are an important step forward for people affected by MS. It is vital that health boards implement these effectively so that indviduals are able to access the high quality care they need, wherever they live.  Personalisation of social care: It is increasingly recognised that the most positive health and social outcomes are achieved when support is personalised. It is essential that people living with MS are given real control over the management of their condition and the care they receive.  Investment and support for research: The cost of MS to Scotland is enormous. We don’t know why MS is so prevalent in Scotland but we do know that more investment and government support is needed for research into this condition.

As a branch, getting involved in the MS Society Scotland Manifesto campaign will help your branch to do the following:

 To raise local issues of importance with those who have influence in your local area as well as nationally.

 Provide your branch with useful contacts. MSPs can often be influential in individual cases as well as in broader policy issues. For example, Ross-shire branch successfully lobbied their constituency MSP and regional MSPs for better physiotherapy services in their area. With the support of Caithness and Inverness branches, the Ross-shire branch kick-started a chain of events which led to the creation of 2 specialist MS posts!

 Help raise the profile of your branch. Talking to your MSP or Prospective Parliamentary Candidates (people standing for election in your area, known as PPCs) is a great opportunity to get noticed using local media (Go to section 4 for some useful tips).

3 2. What your MSP can do and what they can’t do

In Scotland, your MSP has responsibility to represent the views of his/her constituents with those of their own and those of their party. MSPs have responsibility for making laws relating to matters that have been devolved to the Scottish government – this includes healthcare and social care.

Matters relating to employment and benefit are still debated in Westminster. For more information on how to campaign on UK-wide issues join our campaigns network: http://www.mssociety.org.uk/get_involved/policy_campaigns/campaigns_network/ind ex.html

You can ask your MSP to:

 raise issues during a parliamentary debate  vote a certain way on key pieces of legislation  ask questions in Parliament  write to the Scottish minister responsible

4 3. Contacting your current MSP or Prospective Parliamentary Candidate (PPCs)

Your current MSP may be standing for election to the Scottish Parliament again. However, when the Scottish Parliament closes before the election, there will technically be no MSPs until we all vote on 5 May. All candidates standing for election will be referred to as Prospective Parliamentary Candidates (PPCs). If your current MSP is standing for election again it might still be useful to contact his or her opponents in case they win the seat from your current MSP.

Prepare

Remember that the aim is to make the MSP your partner and develop a constructive on-going relationship. You don’t need to be an expert but knowing key facts will show the MSP that you are serious about the issue (See our information pages in the Resources section of this pack).

Who is your current MSP?

To find out who your current MSP is before the election, go to www.theyworkforyou.com.

Most MSPs will have websites so that you can find out where to write to them. If you are writing to your MSP before the end of March you can contact them at their Holyrood Address: Name of MSP The Scottish Parliament Edinburgh EH99 1SP

Who is standing for election in your area?

You can see who is standing for election in your area by checking on the political party websites: Scottish Conservative: http://www.scottishconservatives.com/people/candidates Scottish Green Party: http://www.scottishgreens.org.uk/people/show/5 Scottish Labour: http://www.scottishlabour.org.uk/candidates2011 Scottish Liberal Democrats: http://www.scotlibdems.org.uk/people/holyrood/candidates Scottish National Party: http://www2.snp.org/candidate_profiles

Sometimes it can help to find out more about your MSP...

 Does your MSP sit on a committee? Do they have expertise in a certain area? This position might make them more influential with policy-makers.

 What party does your MSP belong to? Does the party have an official line on your issue?

5  Has your MSP acted on this issue before? Will this make them more or less sympathetic to your ‘asks’?

 Is your MSP a member of the government or a shadow minister? If they are, they may have more influence on policy-making but they will be unlikely to go against their party line.

 If you are not online why not ring their office to find out more about a particular issue.

Writing a letter

Writing to your MSP is a quick and easy way you can make a connection with your MSP, and ask them to put MS on the map. To make it easier we’ve included a template letter in the Resources section of this pack.

If you wanted to write you own letter, however, here are a few quick tips:

 Make any letter personal. Address it to your MSP and sign it yourself.

 Make your letter punchy – try not to write more than one page.

 Tell your MSP that you will be voting on issues that affect people with MS.

 Have a clear ask from your MSP. What do you want them to do? Ask the government a question? Table an amendment to legislation? Put in for a debate? Write to a minister? Sign a petition?

Meeting your MSP or PPC

 Most MSPs hold regular meetings (known as surgeries) with their constituents. These give you a chance to meet your MSP in person, which can often be more effective than writing a letter.

 You can find out when your MSP meets his/her constituents by checking on their website or by calling their office. You may need to make an appointment.

 Make sure you go to the meeting well-prepared (see Resource section). We recommend that you stay focused on one issue. What part of the manifesto is most important to you?

 Take a copy of our manifesto with you. Ask your MSP to read it. Explain to the MSP what part is most important and why it matters to you.

 Make sure you know what you want your MSP to do about it – our manifesto ‘asks’ should provide some ideas.

 Think about what the counter-arguments might be to your suggestions.

6  If there is a question the MSP asks that you can’t answer simply tell them that you will get back to them about it.

 It might be helpful to take notes – especially if your MSP agrees to take some action. Make sure you leave knowing what action the MSP is going to take.

 Remember to be confident – you are the one person who knows most about your condition. Practice with a friend first or contact the Policy team for some advice: [email protected] or 0131 335 4050.

 After the meeting, write to thank your MSP for meeting you. Offer to help them with any information they may need.

Inviting your MSP or PPC to a branch meeting

There are other ways to get your MSP interested in MS. MSPs like to be visible in their constituency. They’re very busy people, but often make time to meet people. You can take advantage of this by inviting them to your branch or support group meeting – and talking to them about MS issues locally and how they can make a difference by supporting our manifesto

 First, phone or email your MSP’s office to ask if they will meet with you. MSPs offices are very busy places, and it is most likely that you will speak to a member of your MSP’s staff, rather than to your MSP themselves.

 When you phone make sure you have all the information to hand so they know what you want to discuss with them. Have a date and time for the proposed meeting, the address of where you would like to meet and a short list of things which you will want to discuss with your MSP.

 Explain that you would like your MSP to attend a meeting with your branch or support group members. The more people who will be there, the more likely the MSP is to attend, so have a rough idea of numbers.

 It doesn’t take much preparation once you have secured a meeting date. You will be the experts on most of the issues you discuss, as you’re living with MS every day. Use this to your advantage, and tell your MSP exactly how MS affects you.

 Publicise the meeting, in your branch or support group newsletter, on noticeboards and in your local newspaper. The more people affected by MS that come along, the better.

 If you can, invite the local press and a photographer – MSPs are always keen to show that they are active in their communities. We are happy to offer any advice and guidance you need. Contact the Policy team on [email protected] or 0131 335 4050 if you would like some tips on organising a meeting with your MSP or PPC.

7  Put together an agenda for the meeting. An agenda covers who is going to welcome the MSP and thank them for coming, who will speak next and what they will talk about and how long there might be at the end of the meeting for questions and answers.

Quick tips

 Always thank them for attending  Start by explaining what the manifesto is about and what it means for people with MS locally – talk about the services and issues in your area.  Make it clear to your MSP what you are asking them to do – see the ‘asks’ made in the manifesto (under ‘How you can make a difference’)  Take notes. Make a note of anything your MSP commits to do so that you can follow this up. Get in touch a few weeks later to find out if they’re made progress.

Knowing which MSPs take an active interest in MS is really helpful to our work in the Policy team.

Please let us know how your MSP responds to your letter or visit by contacting us at: [email protected] or MS Society Scotland, Policy Officer, Ratho Park, 88 Glasgow Road, Ratho Station, Newbridge, EH28 8PP

4. Writing a letter to the editor of a local newspaper

8  Writing to the editor of your local newspaper is a good way of highlighting an issue to the local media and to the public.

 In addition, MSPs and councillors are very sensitive to local opinion – especially in the run-up to an election. One way to gauge public opinion is by looking at the ‘Letters to the Editor’ page in local newspapers.

 Alternatively, if your MSP has appeared in the newspaper speaking about a particular issue you could write to the newspaper with a response.

 Find out if the newspaper’s editor is male or female (names are not really necessary) and when, including time, they need to receive a letter by.

 Wherever possible, email your letter rather than posting it.

 The paper will have a letters editor who is likely to print what they believe to be the most interesting parts of your correspondence, so don’t be disheartened if they edit it down.

 Keep the text to the point, be polite and give credit where credit is due – but criticize if deserved. For example, if you have an excellent MS Nurse but you never get to see them as they are too overstretched, make that clear.

 If you are writing on behalf of your MS Society branch to a newspaper you know is received by several branches in your region, consider joining forces and co- signing the letter.

 Finally, remember that the newspaper will receive many letters every week and they cannot cover everything. If your letter doesn’t appear, give the newspaper a call and politely ask why – perhaps they could offer you some advice for the future?

9 5. Contacting your local health board

The Clinical Standards for Neurological Health Services, published in October 2009, set out the standards that all health boards must meet when providing neurological services.

Unlike MSPs or local councillors, most health boards are not elected by the public. When health boards do not meet the standards expected of them MSPs play a crucial role in holding them to account. When contacting your MSP (See Section 3) why not speak to them about the standards and how they can ensure that they are kept high on the political agenda?

However, you can also take action yourself! Health boards are required to work with patients. Why not write to your health board to find how the Standards are being implemented? A template letter has been included in the Resources section of this pack – it includes space for you to describe how the standards affect you.

You can also contact your local Patient Information Officer or Involvement Officer to find out what services are available for people with MS and whether these are changing as a result of the standards. The contact details for health boards can be found on the MS Society Scotland website: http://www.mssocietyscotland.org.uk/get_involved/policy_campaigns/policy_forum/h ealth_boards.html

You can also provide feedback on your health board via the following websites:

Better Together: http://www.bettertogetherscotland.com/bettertogetherscotland/CCC_FirstPage.jsp

Patients Opinion: http://www.patientopinion.org.uk/

10 6. Spreading the word

Social networking sites are great ways to spread the word about our campaigns and the action you’ve been taken. So join us on facebook and twitter and recommend us to your friends!

Tell your friends about us!

Talk to us! We want your thoughts and experiences to be at the heart of our policy- making and campaigns. There have been positive developments in government policy recently (like the neurological standards) but we need you to tell us if these developments are actually making a difference to you!

There are many ways to talk to us and share your experiences:  Take part in our Policy Forum. The Policy Forum is a chance for you to meet with us and share your thoughts on issues you feel passionately about.

 Join us on facebook and twitter. The Society updates its facebook page and twitter regularly. Follow all the latest news and events and keep us updated on what you think!

 Joining the national campaign network. The campaign network is a UK-wide online space that allows you to get informed about national campaigns and share your local experiences. Find more details and join at: http://www.mssociety.org.uk/get_involved/policy_campaigns/campaigns_network/ index.html

 Write/phone/email us. Jo O’Neill, the Society’s Policy Officer can be contacted at: MS Society Scotland, Ratho Park, 88 Glasgow Road, Ratho Station, Newbridge, EH28 8PP. T: 0131 335 4050. E: [email protected]

11 Resources

12 TEMPLATE BRANCH NEWLETTER ARTICLE

Get campaigning to support your MS Society Scotland Manifesto!

On 5 May 2011 there will be a Scottish election where we will all get to decide who becomes our next MSP and who forms the next Scottish government. MS Society Scotland needs the help of everyone in [insert branch area] to influence the next Scottish government.

What is the Manifesto? It is crucial that we increase awareness of MS and hold government to account on the important issues for people affected by MS.

MS Society Scotland has produced a manifesto based on the hopes and concerns of members like you. The Manifesto calls for a number of things in 3 key areas

What can you do to support the MS Society Manifesto? It doesn’t matter what your interest in MS is, and whether you've got 30 seconds to spare or a day, everyone can do something to support the MS Society Scotland Manifesto!

If you don’t have a lot of time... sign up to our Policy Forum by emailing [email protected]. Joining the network will mean you are kept informed of all our policy and campaigning work.

If you have ten minutes or more... send a letter to your local MSP or arrange to talk to them about MS and the MS Society Scotland Manifesto.

You can also write to [email protected] with your name and post code to find out how to get more involved with the campaigning.

The Manifesto isn’t just for 5 May – start getting involved now!

13 TEMPLATE LETTER FOR MSP OR PPC

Your address

Name of MSP Address of MSP

Dear Name

The MS Society Scotland Manifesto

As someone living with multiple sclerosis / someone affected by multiple sclerosis / on behalf of the [name] branch of the MS Society, I am writing to ask for your commitment, as one of my local Prospective Parliamentary Candidates, to ensuring that every person with MS has access to excellent healthcare and personalised support, so that they can lead a full life.

I am just one of more than 10,000 people in Scotland who live with MS. Many more are affected by this condition as friends, family members, colleagues and carers. Yet some of my basic needs regularly go unmet.

I have enclosed a copy of the MS Society Scotland manifesto, which shows how future MSPs can make a difference to people living with MS:

As a potential future constituent and as someone who is directly affected by MS, I feel it is important that my elected candidate backs the MS Society Scotland’s campaign because… [Please talk briefly about what some of the topics mentioned in the MS Society Manifesto mean to you.]

Thank you for your support.

Yours sincerely,

Your full name

14 TEMPLATE LETTER TO HEALTH BOARD

Your name and full address

Name of Chief Executive Health Board address

Dear Sir,

As someone living with multiple sclerosis / someone affected by multiple sclerosis / on behalf of the [name] branch of the MS Society, I am writing to ask for your commitment, as the Chief Executive of NHS [name of health board], to ensuring that the Clinical Standards for neurological services are implemented so that every people living with MS are able to access excellent healthcare, wherever they live in Scotland.

I am just one of more than 10,000 people in Scotland who live with MS. Many more are affected by this condition as friends, family members, colleagues and carers. Yet, up and down the country, people with MS are regularly find that some of their basic health care needs go unmet.

As you know, the Clinical Standards for neurological services were published last year in an attempt to address these problems. Can you tell me what progress your health board is making in implementing the standards? As someone directly affected by MS, I want to feel confident that my health board is doing all it can to meet the standards. [Please talk briefly about what the standards would mean to you.]

The MS Society Scotland has been campaigning for the effective implementation of the standards in its election manifesto. I would encourage you to read this short document which can be found at www.mssocietyscotland.org.uk

I look forward to hearing from you.

Your name

15 Information

16 Making excellence the standard in healthcare

What are the Clinical Standards for Neurological Services?

In October 2009 the government published Clinical Standards for Neurological Health Services. This document lists a number of key standards that all health boards should meet when caring for patients and their families using neurological services. The aim behind the standards is that people using neurological services receive the same excellent standards of care wherever they live in Scotland.

The standards assert that an effective and comprehensive neurological health service is available across Scotland. They state that such services should have an effective patient-management process from the point of first referral.

There are also standards specifically for people living with MS. These state that an “effective and comprehensive” specialist MS service is available across all health boards and that patients have “ongoing access to MS specialist services appropriate to their needs”. The standards also stipulate that all health boards must provide a co- ordinated MS diagnosis service with access to a multidisciplinary team experienced in the diagnosis of MS.

So what’s the problem?

The standards mark a very positive step forward for people affected by MS. Yet some people with MS are still experiencing poor standards of healthcare from their health boards. We want to make sure that all health boards are meeting the standards so that every person affected by MS is able to access the care that they need.

What are we asking for?

Unlike MSPs and local councillors, most health board members are not elected by the public. When a health board does not meet expectations it is up to MSPs to hold the board to account. That is why we need MSPs to monitor their health board and ensure that they are putting the standards into practice.

By contacting your MSP and asking them to consider taking action on the standards you will ensure that they stay high on the political agenda.

MSPs are able to hold health boards to account in a few ways. Why not ask your MSP to consider taking the following courses of action?  Write to the health minister asking for an update on the implementation of the standards.  Call for an update by tabling a Parliamentary question.  Call for a Parliamentary debate on the standards.  Write to/meet with the health board directly to ask for an update.

Alternatively you can contact your health board directly and ask for an update on action being taken to implement the standards.

17 Putting people in control – Self Directed Support

What is self directed support?

In a nutshell, self directed support (SDS) is about choice. With SDS, individuals are given real choice and control over what support they receive, how and when it is delivered and by whom. There are different ways people can direct their own support:

 Direct payment – some people may have already heard of this. DP is when the local authority makes a payment to the individual in place of services that would otherwise be provided or arranged by the authority on the person‘s behalf. The individual can then purchase services from a provider or individual of their choice. With DP the individual has complete responsibility for organising and administering their support.  Directing available budget - This is sometimes called individual service fund or individual budget. It is where an individual decides how the local authority is to arrange their support with their allocated care budget. In this instance, the individual chooses the provider and type of support but the local authority is responsible for administering this.  Local authority arranged service – SDS is about choice and some people may prefer not to make their own arrangements but to leave it up to the local authority to decide what support they should receive.  Support can also be a combination of the above measures.

Direct payments have existed for some time (since 1996 in fact) and at the moment, local authorities are supposed to offer direct payments to individuals who are eligible. However, this is not the case in all local authorities. Individuals have been misinformed or not informed at all about self directed support options meaning that take-up and understanding is patchy across the country.

In November 2010 the government published a 10-year National Strategy for SDS. It sets out plans to develop SDS as the main way for social care to be delivered. The government is very keen then that everyone is able to choose the support they receive and that everybody has the information to make the choice that is right for them. To ensure that everybody understands what SDS is and what it can mean for them we would like MSPs to support the national strategy and support a national awareness campaign.

The government also plans to change the law so that every local authority promotes self directed support and ensures that individuals are able to access the care option of their choice. We are asking MSPs to give their backing to this Bill so that the law reflects the current thinking about social care.

18 Putting people in control – Peer-led Programmes

What are peer-led programmes?

Peer-led programmes are often run by volunteers who have a long-term condition themselves. The MS Society’s self management programme is an example of this. Self-management is a process developed by individuals to manage the symptoms of their condition on their own. The self management programme teaches techniques such as pain management, relaxation, communication and problem-solving. Participants have told us that the programme really works! It has given them greater confidence and has enabled them to feel in control of their MS and their lives.

It is increasingly recognised by government and leading health experts that better health comes from giving people real control over their health and well-being. In addition, not only do peer-led programmes empower participants to take control of their lives, they also reduce the number of hospital admissions and GP visits; thereby saving the public purse considerable amounts of money in the long-term.

At the moment, peer-led programmes are mainly short-term projects with limited funding. Many people with long-term conditions like MS do not know about peer-led programmes or have been misinformed about what they are. Self management, for instance, does not mean that you have to manage on your own or go without support or services. Similarly, many GPs are not aware of peer-led courses in their area and so don’t inform patients of these options.

More investment is needed to ensure that peer-led programmes can continue and that more programmes are made available. We want the next government to commit to extending the Self Management Fund beyond 2011. It is important that the value of peer-led programmes is recognised so we are also asking MSPs to raise awareness of peer-led programmes with their local health boards.

Since most peer-led programmes are led and managed by volunteers it is crucial that the next government invests in schemes to recruit and train volunteers so that they are able to deliver these programmes and develop employment skills at same time.

19 Ensuring research is a priority

What research do we mean?

We know that Scotland has the highest rates of MS anywhere in the world. We also know that MS affects three times as many women as it does men. What we don’t know for sure is why. Thanks to MS Society-funded research, however, we are starting to discover more pieces of the puzzle.

Earlier this year for instance, scientists using stem cells demonstrated that the prospect exists for the body to repair some of the damage done by MS. This exciting development will be explored further with the help of funding by the MS Society. Our collaboration with scientists at Oxford University has also pointed to the possible links between vitamin D and MS.

More investment and government support is needed to so that these and other lines of research can be explored further. Greater investment and joint-working between the public, private and third sectors is also needed if we are to develop innovations to the point where the NHS can use them.

Scotland has an excellent and internationally-renowned scientific research base, attracting top scientists and researchers from across the world. We are calling on the next government to give science the status it deserves. This includes appointing a Scottish Minister for Science as well as a parliamentary committee dedicated to science. In this difficult financial climate we need a single voice to stand up for science!

We are also asking the next government to support the MS Society in establishing an international working group on Vitamin D and its links to MS. Research has shown that vitamin D may have links to MS but further study is needed into some unanswered questions.