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save MS nurses
How to campaign to..
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Foreword
• MS Society• Royal College of Nursing
• United Kingdom MS Specialist Nurse Association
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What the MS Society believes
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What the MS Society is doing
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About this guide
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How to campaign
• Getting started• Know the facts: Get informed
• Know your rights: Making the case for MS specialist nurses
• Involving the right people
• How to plan and build your campaign
• Raising awareness
• Getting loud
• Case study campaign – Ipswich
• Case study campaign - Anonymous
• Case study campaign – Anonymous
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Appendices
• What does the National Institute for Clinical Excellence say?
• What does the National Audit Office say?
• What does the National Service Framework say?
• What does the NHS Outcomes Framework say?
• What does the NHS Constitutions say?
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Template letters
• Letter to MP• Letter of complaint to trust
• Example questionnaire
• Example newsletter
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Foreword
The MS Society believes MS specialist nurses should be an integral part of the care and support that people with MS receive. People with MS have consistently told us that access to an MS specialist nurse is invaluable to them, and being able to receive specialist advice and support means that people with MS do not have to
receive other, more expensive services1. However, 100,000 people with MS in the
UK are supported by only 276 MS specialist nurses – on average this is just one nurse to 450 people with MS.
The NHS is under pressure to find £20billion worth of efficiency savings before 2015. This enormous financial pressure has meant that developments in MS specialist nursing services are being blocked, and existing posts are being put under increasing scrutiny.
This is why now, more than ever, it is important to campaign to protect posts where they already exist. MS Society staff and volunteers have already been instrumental in protecting 16 nursing posts across the UK. Had these posts been lost, approximately 7,200 people with MS would have been without the support of an MS specialist nurse. But together we can do, and must do, much more to raise awareness of the excellent work of MS specialist nurses, and the range of support and care they provide. We must protect existing posts that are under threat so that people with MS can continue to benefit from their skilled care. This guide is designed to help campaigners like you to demonstrate the value of an MS specialist nurse and make an effective case for retaining them. It contains ideas on what all of us can do together to save your MS specialist nurse.
I hope this guide helps you ensure more people with MS get the essential support of an MS specialist nurse.
Patricia Gordon
Acting Chief Executive MS Society
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Foreword
Royal College of Nursing
We know that MS specialist nurses make a hugely positive
difference to the lives of the patients they care for, and those of their
family and friends. I am very happy to welcome this guide from the MS Society, a charity that does so much to promote such an essential nursing specialism. Through the RCN’s Frontline First campaign, we know that thousands of nursing posts are under threat, and many more have already been cut. What makes the situation all the more frustrating is that we know what a remarkable difference specialist care, like that delivered by MS specialist nurses, makes to patients. Any threat to MS specialist nurse positions is shortsighted. These hugely knowledgeable and experienced nurses play a crucial role in transforming lives through providing high quality, targeted and cost effective care. They keep patients out of hospital, reduce complications and put family members at ease. The time has come to protect specialist nursing posts and to recognise that these nurses represent not only deliver patient care, but represent real value for money too. I trust you find this guide as informative and useful as I did.
Dr Peter Carter
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Foreword
UKMSSNA
MS specialist nurses are cited by most people with MS (who have access to one) as the most important member of the MS
health team and as the person they are most likely to contact. They can reduce the impact on other health services by managing first line areas of care. This can minimise the impact on GP services and neurologist waiting times. They are key to reducing unnecessary admissions as well as expediting safe early discharge from acute hospitals. MS specialist nurses often offer clinics and visits in the local community; making them the most accessible member of the team. Most importantly, they are just at the other end of a phone whenever they are needed.
MS specialist nurses are a cost effective way of ensuring high quality, equitable care is provided to people with MS and their families at any time. That MS
specialist nurse posts are currently at risk due to lack of insight by commissioners and managers who mistakenly believe that reducing posts will save money, when in fact the opposite has been shown to be true, is a sad fact and increasingly prevalent.
The UKMSSNA are happy to endorse this toolkit which gives people affected by MS the means of ensuring that they can add their voice to the existing campaigners for supporting the MS specialist nurse post.
Alan Izat
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Introduction
The MS Society knows that MS specialist nurses provide wide-ranging services that many of you rely on - support, information and advice that meet your specific needs, help you to manage your MS and enable you to remain independent.
Decreasing budgets, the increasing cost of healthcare and a lack of understanding of the funds and consultant/GP time they free up means that MS specialist nurses are at risk. This means they are being asked to justify their post; hours are being reduced; posts are under review; services are being diluted and some are being cut altogether. Any decision to cut back on MS specialist nurse posts will inevitably have long-term implications on the standard of care received. Cut backs in services can leave people with MS without adequate support and result in an:
• increase in the length of time to receive return phone calls
• increase in waiting times for clinic appointments
• restricted phone calls • restricted home visits
• heavy burden on remaining staff who would not have a specialism in MS
There are 100,000 people in the UK with multiple sclerosis and only 276 MS specialist nurses. On average that is just one nurse for every 450 people with MS.
“If this service was removed or reduced I believe that all people in our area would suffer a huge reduction in the level of care they receive. Our MS specialist nurse runs maintenance clinics for people with MS which allows the neurologist to concentrate on those people with new symptoms or newly diagnosed as well as other conditions.”
- Miriam Ahmed
“The MS specialist nurse has had her position adjusted so that she now works a day a week on a ward, taking her away from clinics and community. So the MS specialist nurse now covers a huge area alone and with reduced availability to people affected by MS. The service I feel is being totally watered down... and waiting times are approaching unacceptable.”
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What the MS
Society believes
Thousands of you have told us that your nurse is the single most important person in your care set up, being more familiar with MS than many GPs and more accessible than neurologists . You have told us that your MS specialist nurse understands your MS in a way no one else does therefore the MS Society believes that:• ALL people with MS should have fair and equal access to a dedicated MS specialist nurse to meet their specific needs
• MS specialist nurses are an integral part of MS service provision and should be funded and provided through statutory healthcare services
• More MS specialist nurses should be available to ensure a manageable caseload for each nurse and to help them cope with the demand for this service
What the MS Society is doing
So far the MS Society, together with local campaigners, has saved 16 MS specialist nurse posts and we are currently campaigning to save many more across the country. The MS Society is a part of the Royal College of Nursing’s ‘Frontline First’ campaign to ensure MS specialist nurses are seen as a vital frontline service. We have produced an interactive map of the UK that shows which areas currently have an MS specialist nurse in post and which do not.
nurses are to people with MS; as well as working locally to gather information on posts that are at risk and supporting campaigners to fight back.
Join the Campaigns Community!
Get information on the policies that affect you, take action to make decision makers aware of what matters to you, and get support from the community to campaign on local issues. We will send you a few emails each month. There’s no set schedule, we’ll only contact you when there is something we think you will want to know. Sign up to the Campaigns Community today
What my MS specialist
nurse means to me
Christopher“My MS specialist nurse is one of the anchors in my life, and a wonderfully approachable,
warm, down-to-earth and practical person. I can contact her any time. Friends can be supportive, but my MS specialist nurse has expertise, and through that, authority and understanding which makes her support extra special.
She is full of good ideas, ready to open doors and takes initiatives whenever a new need arises, whether it’s testing bladder function when I’m worried about it, or putting me in touch with the wheelchair service when I’m struggling to get around. Although I contact her rarely, the important thing about her is that she is always there if I need her - knowing this makes my daily life significantly easier and happier.”
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About this guide
There are lots of things you can do to campaign to save an MS specialist nurse post that is at risk in your local area. This guide sets out 10 easy steps that will help you to:
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identify the right people to involve in your campaign•
show the value of an MS specialist nurse to decision-makers•
understand the simple things you can do that can help saveyour MS specialist nurse
The 10 steps are divided into three sections on: 1. Getting your campaign started
2. Building and planning your campaign 3. Raising awareness through getting loud
Throughout each of the steps there are lots of hints, tips and ideas on how you can campaign to save your MS specialist nurse, including some examples of successful campaigns that have taken place across the country. We hope this will inspire you to campaign and make a difference.
Remember you don’t have to set up and start a campaign by yourself. The successful campaigns are the ones that involve a number of people joining together to make a positive difference. Don’t be put off if you feel you won’t be able to carry out all the steps. You don’t have to. This guide outlines many simple ways you can get involved in a campaign, from writing a letter to signing a petition and you don’t have to do all of them.
Campaigning to save an MS nurse is a joint effort and takes time. Most campaigns are led by local MS Society staff and your contribution, no matter how great or small, would be valued at any stage of a campaign.
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If you want to find out more about how the NHS in England is run and how Trusts are made up and managed the NHS Choices
website provides a good overview. A Clinical Commissioning Group is responsible for planning, buying and delivering health care for residents living in a particular population. This may include MS specialist nurse posts.
How to
campaign…
If you hear that an MS specialist nurse post is at risk there are many things you can do to make the best possible case to retain their post. It is important to remember that these campaigns can be a time consuming process but carry on and do not to give up hope. Each campaign can be very different from the next campaign. How you campaign and what actions you take is often determined by local circumstances. The 10 steps below will help you gather key information to help you to decide what course of action is appropriate in your area.
Getting started
Before you start your campaign you should consider the following points of action first:
Step 1:
Involving the right people
It is important to have the right people involved from the start of the campaign, whether it is high profile and involves your Member of Parliament or whether it is low-key and involves closed negotiations with your hospital trust or Clinical Commissioning Group
Campaigning to save an MS specialist nurse post requires a joint effort and needs to be carefully co-ordinated.
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Service Development Officer. First and foremost you should contact your local MS Society branch and ask to be put in touch with the Service Development Officer (SDO) for your region. SDOs are well placed to take the role as central co-ordinator for a campaign.10
Andrew Kemp, SDO for the South-West
What do SDOs do?
As an SDO I find out from people with MS what services they need to access, what the main gaps are and the problems and barriers in the way of this being achieved. I try to develop relationships with the right people across the health and social care sector with a view to making improvements to services and tackle problems around access to good quality care.
Your SDO will be aware of the MS specialist nurse situation in your area and will have links to key decision makers. They will be able to work with
you to find out all the relevant information listed in the next step. SDOs have been instrumental in previous campaigns to save MS specialist nurses, so it is a good idea to get in touch with us early on. You should also consider the following groups of people in your campaign:
People affected by MS. Set up a meeting with your local branch and establish a
campaigns group. Your SDO will know of people in your area and will be able to put you in touch. You are likely to have more impact and influence if you are campaigning as part of a group rather than as an individual. The absence of an MS specialist nurse is likely to affect a large number of people in your area, so there is no need to go it alone.
Health professionals. You may also want to consider approaching key health professionals, for example, your local GP and neurologist to add weight and support to your campaign.
MS specialist nurse. They may or may not want to take an active and high profile role in the
campaign due to the sensitivities surrounding the situation, so it is important to bear this in mind.
Neurologist. They will have a good idea of the valuable contribution MS specialist nurses make and may be able to become involved in negotiations with the trust to help save your MS specialist nurse post.
Partnerships with other organisations. Specialist nurse posts exist for many other conditions e.g. Parkinson’s, Epilepsy, MND so if the MS specialist nurse post is under threat in your area it is possible that this will also be an issue for nurses dedicated to other conditions. So get in touch with the local branches of other organisations to see if there is a way you can work together. Your SDO may already have contacts with local staff from other organisations or you will be able to find branch details on their individual websites.
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Step 2:
Know the facts: Get informed
Find out as much information about the
situation surrounding your MS specialist nurse as possible. The more accurate information you have, the better informed your campaign will be. Your SDO will be a good source of information for all the following points:
Who?
It may sound obvious but knowing who funds the MS specialist nurse post is important. Finding out what the funding arrangements are for the post and why this has changed or come under review. This will allow you to influence the right people and will save you time in the long run.
What?
Clearly identifying what the situation is and what the reasons behind the decision are will help you to make the case for saving your MS specialist nurse more effectively. For example, whether your MS specialist nurse is still in post or not can greatly influence the tone of your campaign and the activities that you engage in. If an MS specialist nurse is still in post whilst a review is being carried out you may want to tread carefully.
When?
Find out when key events in the process are likely to take place. For example, if an MS specialist nurse post is under review when is this likely to start and end? When is the post due to be cut or changes made to the post i.e. reduction in hours?
Why?
Identify the reason/s why the MS specialist nurse post has been put at risk and why the process has started now. The process may have been triggered by:
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An effort to save money•
A specialist nursing review•
Retirement of a nurse•
A change of role due to a new community service taking work awayThis information should come from an official source in writing i.e. employer of the MS specialist nurse. Getting this information may not be simple or straight forward and may require you to do some digging and contact several people in order to be able to piece together the puzzle. For example the decision-makers may not be forthcoming with the information you need so you may have to follow up your letter. Persistency is the key!
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Step 3
Know your rights: Making the case
for your MS specialist nurse
Once you are fully informed you will have to be able to influence a number of key people and organisations, for example those that commission the service, the media, your Member of Parliament and the wider public. To do this you will need to make sure you have clear arguments for why your MS specialist nurse post should be retained. It helps to know what you are entitled to and the policies and documents that can support your case. The following policies set out your rights and entitlements to an MS specialist nurse. We would recommend referring to these policies when making the case for your MS specialist nurse.
Click on the policy to get more information on how it can strengthen your case for your MS specialist nurse.
a.The NICE Clinical Guideline for MS
b. The National Audit Office (NAO) report on services for people with neurological conditions
c. The National Service Framework for Long-term Conditions d.NHS Outcomes Framework e.The NHS Constitution
What my MS specialist
nurse means to me
Donna“It seems there is nothing my MS nurse wouldn’t
do for you. She has counselled
me when going through a time when I thought I had reached the end of the road with this disease and my world was filled with darkness, helped guide me through serious decisions when changing disease modifying treatments, given me advice on symptom management and helped us liaise with the neurologist when we need additional support.
Everything you expect from an MS specialist nurse. But she fills the role equally as a friend as well as a health professional and goes beyond the capacity of her job.
She laughs and jokes with us, sang funny songs to me during my first Tysabri infusion to diffuse my nerves and became a rock to me when I suffered an emotional and physically painful
miscarriage. The world needs more Maxine’s.”
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Once you have gathered the necessary
information and identified key people to involve you can begin to plan your campaign and consider the course of action you are likely to take. This plan should not be set in stone and is likely to change depending on how key decision makers respond to your campaign activities.
Step 4:
What is the evidence?
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Get official confirmation – One of the first things you should do is to obtain official written confirmation on their position from the Trust. Write a formal letter to the Chief Executive of the hospital or the CCG asking for written confirmation. Your SDO can help you with this.•
Use the cost-calculator – Most commissioners will want to know theeconomic value of retaining an MS specialist nurse post. The MS Society has developed a cost calculator, which healthcare
professionals can use to make the case for a role and its cost effectiveness. It is worth making sure your MS specialist nurse, if still in post, and Trust are aware of this tool. Your SDO will have the skills, knowledge and experience to support them to make the most of this tool.
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Develop a questionnaire – Gathering information and strong evidence on the impact of the MS specialist nurse service will help you to make a powerful and meaningful case for the retention of your MS specialist nurse.To find out how the absence of the MS specialist nurse would affect people in your area you could devise a questionnaire similar to the one contained in template D. Your branch can help you circulate this to members and people affected by MS in your local area.•
Supporting other healthcare professionals – highlight that the specialist knowledge MS specialist nurses have are also invaluable to healthcare professionals and healthcare services. MS specialist nurses can help to: a. Reduce GP referrals to hospital, freeingconsultant time and increasing the potential to meet and improve eighteen-week referrals to treatment targets
b. Reduce actual appointment time for GPs and neurologists
c. Facilitate timely referral to other services and ensure appropriate discharge planning, which:
- prevents unplanned, emergency admissions/readmissions
- prevents bed-blocking
- reduces referrals to acute neurology services
d. Increase awareness of the needs of people with complex disabilities to other staff, leading to:
- fewer inappropriate referrals - fewer unplanned and emergency
admission
Planning and
building your
campaign
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Step 5
Key Messages
The key thing is to ensure your arguments for keeping the MS specialist nurse post are clear, hard-hitting, consistent and backed up by evidence. The evidence gathered in the previous step should help you to develop these. Here are some ideas for the type of key messages you may want to consider that will help you to influence the right people:
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MS specialist nurses play a fundamental role in the treatment of people with MS. Research shows that MS specialist nurses do not just administer treatments – they provide vital information; refer people with MS to other specialists and play a role in supporting carers too. MS specialist nurses also help people with MS to remain independent and feel well supported.
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The skills of the UK’s MS specialist nurses are the most advanced in Europe. According to a survey by the European MS Platform in (October 2010) MS specialist nurses play a leading role in the symptom and medication management of people with MS; they’re highly trained and are considered strong advocates for their patients.
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MS nurses can save the NHS money. Ask your MS specialist nurse or SDO to use the MS Society cost calculator to work out how much money the MS specialist nurse service in your area can save the NHS.
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The withdrawal of MS specialist nurses could have a negative impact onother MS services too. MS specialist nurses play a key role in training other professionals. Their skills and knowledge are highly valued by consultant neurologists – many of whom call on MS specialist nurses for information. Neurologists have said the loss of MS specialist nurses would be a great disadvantage to the healthcare system and people with MS.
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The absence of an MS specialist nurse will have long term implications for the care of people with MS, their quality of life and their ability to remain independent.
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Hospital Trusts and CCGs need to be clearer about how they will ensure services meet the needs of people with MS; greater clarity will reduce anxiety and confusion.
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Step 6:
Making a complaint
Once you have gathered your evidence you may want to make a formal complaint. Often a complaint is written as a letter to the Hospital Trust, the local CCG or NHS England – depending on who funds the service. If you are making a complaint to your Hospital Trust or CCG make sure you find out what the local complaints procedure is. This can usually be found on their website or you can ask at your General Practice. Alternatively you can ask the Patient Advice and Liaison Service based at the hospital for information on the complaints procedure. You can find out how to make a complaint to NHS England on its website here. In your letter set out the case for your MS specialist nurses and be sure to include information on:
their value
why they are needed your personal experience
attach any supporting evidence such as letters, emails and any relevant notes encourage others to do likewise
There is a template letter of this kind at the end of this guide (template C).
A step-by-step guide on how to complain can be found on the NHS Choices website or, alternatively, more information can also be found on the Patient’s Association website.
It might also be a good idea to inform your local Healthwatch of the changes to the MS specialist nurse service in your area. Your local Healthwatch is responsible for speaking up for patients and voicing your concerns to the appropriate people. The can hold your local NHS body to account and get answers for you, so it’s worth getting in touch with them.
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Step 7:
Have your say!
Before NHS organisations can make changes to any aspect of health services that would affect individuals they must involve and consult patients, public and staff in:
a. The planning of the provision of those services.
b. The development and consideration of proposals for changes in the way those services are provided, and
c. decisions to be made by that body affecting the operation of those services.3
This is a legal requirement outlined under section 242 of the recently passed Health and Social Care Act (2012), which can apply to any changes in the MS specialist nurse service - whether the service has been removed or the hours reduced - that could negatively affect people with MS.
It is worth finding out whether the CCG or Hospital Trust has or will be consulting and to make sure that your views are heard. If your Trust has failed to
consult on changes to the MS specialist nurse service you should challenge them by writing to them and remind them of their duty to consult. Your SDO should be able to help you put an effective case together.
3 Health and Social Care Act (2012), Section 242
Step 8:
Working with your local NHS
In most cases it may be necessary to work with your local NHS body, rather than against them, to reinstate a full MS specialist nurse service. This may involve negotiating with the Hospital Trust or CCG and working in partnership with them to ensure future services meets the needs of people with MS. In doing so, you and your campaign group may have far greater influence over the decision-making process.
Working in partnership means you will need to proceed with caution when campaigning and options such as involving the media may not be appropriate. It is very important that you consider this at the beginning of your planning so that you can continue to have a constructive conversation with the Trust.
Step 9:
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Public meetings. These are a good way of raising awareness of the issue, rallying the community and providing information. Make sure these are well planned and that your SDO and local branch are aware your campaign group is considering this course of action. They can help you to organise and promote it.Raising
awareness and
getting loud
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Step 10:
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Involving your MP It may be helpful to involve your local Member of Parliament (MP).Itis important that the decision to involve your MP is taken with careful consideration as any issue that involves an MP will inevitably generate media interest.
You can inform your MP of your campaign to save your MS specialist nurse by writing them a letter (there is a template for this kind of letter at the back of this guide, template A) or by paying
them a visit. It may be a good idea to attend as part of a wider group of those affected by the issue and with your SDO.
You can find out more by reading our toolkit on involving your MP.
Remember, once your MP is involved make sure they are copied into all correspondence and that they are made aware of any progress in your campaign.
• Involving the media Finding out you could lose your MS specialist nurse may motivate you to get loud straight away by involving the local media but this is often not the best course of action. It could be counter-productive to your campaign to save your MS specialist nurse especially if you have already or are thinking about engaging in conversation with your local NHS.
Telling your story to the media should therefore be a last resort in your campaign; your story will be stronger if you have already taken all reasonable steps to raise the issue with the trust. Any decision to involve the media should not be taken lightly; it should be done with careful consideration and should be coordinated with your SDO.
If you decide to approach the media then take a look at our toolkit on involving the media.
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Newsletters. This is a good way to keeppeople informed of the campaign and to motivate or inspire them to join in. The Ipswich nurse campaigners used a well-known MS newsletter called the ‘grapevine’ to publicise their campaign to save the MS specialist nurse with much success. There is an example newsletter at the back of this guide (appendix E).
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Petitions. A quick and easy way to get people involved and to demonstrate the strength of feeling amongst the MS community is to start a petition. You can send the signatures collected to your local NHS and your MP or present it in person. Presenting it in person might make a good photo opportunity for a potential press story or newsletter.You can read more about ways to campaign in our local campaigns toolkit
Our press team is extremely skilled and experienced in dealing with the media and may be able to offer further information or advice. You can contact them by emailing [email protected]
Emma Frost, SDO
How our campaign started?
In May 2011 the MS specialist nurse in Ipswich informed Ipswich Hospital Trust that he would be retiring in September of that year. The
Hospital Trust did not have any plans to replace him. Instead the advice issued from the trust was for people with MS to contact their GP should they need assistance or contact the helpline. However the number to the helpline was not shared with the MS community.
What happened next?
A campaigns group - made up of people with MS, their carers and family members was established. They made clear links with the local MS Society branch and me, the SDO, as well as the consultant neurologist at the trust who advocated for the position to be reinstated. Together we gathered as much evidence as we could on the value of the MS nurse and presented this to the trust. They responded by announcing that no decision could be made until a review of all specialist nurse posts and that they would let the us know of the outcome.
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After months of waiting with no response and still no adequate specialist support available we decided it was time to get loud! We started a petition, used Facebook and our bimonthly newsletter to keep everyone updated. We also contacted the local newspapers and got our story published. Some of our campaigners were interviewed on the local radio stations. We produced template letters to make it easy for people to contact the local MP and the hospital management.
As a result…
The trust decided to keep the MS specialist nurse post. After more than a year of lengthy talks, negotiations, getting loud and hard work Ipswich finally have an MS specialist nurse again!
“Throughout the campaign we used the media to draw attention and highlight the issue. However, knowing at what points to involve the media was crucial. Not wanting to destabilise any ongoing talks we were having with the trust we decided we would only contact the media and inform our MP when negotiations seemed to have reached an impasse.”
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TOP
TIP!
No set format was provided for the letters as one of the trust managers suggested that personal stories rather than standard text would be much more compelling.
The identity of the SDO in this campaign has been kept anonymous due to the sensitivities surrounding this particular campaign
How our campaign started?
In November 2010, the lead nurse from a team of MS specialist nurses, employed by an acute trust, handed her notice in. No official information was passed to the MS Society but it was believed that the post would remain vacant to save money. The Trust then embarked on a review of all specialist nurse posts.
What happened next?
Through an MS specialist nurse steering group I kept the 10 MS Society branches, patient/carer representatives - who were not linked with the branch - and the MS specialist nurses up-to-date with information on how patient opinion could be fed into the review and briefing papers on how we could best influence the situation, as well as providing information through local MS Society branch newsletters.
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Five months after the campaign began, one of the managers accepted my invitation to attend the steering group and we were all able to express our concerns about the post and our support for the MS specialist nurse.
As a Result…
Nine months after the nurse gave her notice we were told that the grade and the number of MS specialist nurses would not be amended and that the current vacancy would be filled! We were also told that the MS Society was the only patient group to have expressed concern over the review which affected 150 specialist nurses at the trust - something they admitted had a big impact on the positive outcome for us!
“I encouraged local campaigners, made up of people affected by MS, to write to the nurse manager, CEO, chairman at the trust, their MP and to copy me in - names and addresses were provided to make it as easy as possible for anyone to get involved.”
I also encouraged our campaigners to become members of the hospital trust and to attend listening events to ask questions about the future of the post.
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Anonymous, SDO
The identity of the SDO in this campaign has been kept anonymous due to the sensitivities surrounding this particular campaign
How our campaign started?
In May 2010 a MS specialist nurse received a letter informing her that her role was not “fit for purpose” and that she had just three weeks to prepare evidence in support of her role. This was part of a wider review of all specialist nurses and a similar request had been made of the Parkinson’s and Epilepsy nurses. Without the MS specialist nurse there would be no equivalent community support or any hospital clinics.
What happened next?
I supplied the nurse with as much information as possible on the case for retaining her post, including the MS Society’s cost calculator. As well as this, I called on already close working relationships with key stakeholders, including Parkinson’s UK, Epilepsy Action and the local NHS National Service Framework development manager. I also sought the advice of Monitor, the foundation trusts’ monitoring body.
Because the nurse was still in post and the trust appeared to lack a clear review structure or plan, we decided that the best approach was to press for a meeting with the reviewers and to highlight inconsistencies in process and communication. We also urged the trust to consider the views of service users, with whom there had been no consultation at all.
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Formal letters were sent to the trust’s chief
executive offering the MS Society’s support in the review process and regular requests were made to meet with the people undertaking the review. The MS specialist nurse and I finally secured an opportunity to attend a review meeting just weeks before a decision was to be made. Subsequently, I circulated notes of that meeting to all attendees and the wider review team. Representatives from other charities had also been present.
Success
Three weeks later and seven months after the MS specialist nurse was first asked to ‘prepare a case’ the review concluded that the MS specialist nurse post was ‘to remain in place’, as were those of the Parkinson’s and Epilepsy nurses! The nurse learned later that the review would have had a different outcome for her were it not for the MS Society’s intervention.
“Although this was very much an SDO-led campaign, it was underpinned by regular communication with people affected by MS in the area - to keep them informed of developments, to provide information and to consider making representations to the trust.”
TOP
TIP!
Keeping accurate notes of all meetings was really important to ensure that everyone was kept in the loop, clearly understood what had been discussed and that a great many people considered the review process to be fundamentally flawed.
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Tips for a successful
campaign checklist
Identify key contacts e.g. MS Society staff and work closely with them
Establish a campaigns group. Remember you’re stronger
together
Gather as much evidence as you can on the value of the MS specialist nurse
Find out who the post is funded by and why the post is being removed or reduced. The more accurate information you have the better informed your campaign will be
Make sure you have clear arguments for why the MS specialist nurse post should be retained
Keep detailed chronological notes of all activity and conversations, including names and roles etc
Consider who to involve and when it is most appropriate to involve them. Remember that it can be counter-productive to involve the media or your MP too soon
Ensure that all relevant/key people are aware of all of the
facts at the appropriate time Finally do not give up!
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The NICE clinical guideline for MS is currently 10 years out if date. NICE are in the process of replacing this guide with a new and more up-to-date version. This is due for publication in 2014.
Appendix A:
Key policies and guidance to support the case for your MS specialist nurse
1. What does the NICE clinical
guideline for MS say?
Who is NICE?
The National Institute for Health and Care Excellence (NICE) is an independent organisation set up by the government in 1999 for England and Wales. One of its responsibilities is to provide national guidance on the appropriate treatment and care of people with specific
conditions within the NHS. These are known as clinical guidelines. Although health professionals are expected to take NICE clinical guidelines into consideration when deciding how to treat a person they are under no obligation to do so. They are also used as a guide to help Hospital Trusts and CCGs decide what services to provide, such as an MS specialist nurse.
The NICE clinical guideline for the management of multiple sclerosis in primary and secondary care (2003) recommends a set of standards for high quality healthcare based on best practice. These standards relate to a number of areas including diagnosis, treatment, care and self-help. MS specialist nurses play an integral role in achieving the standards set by the NICE guideline for MS and providing a high standard of care to people with MS and their family and carers. It is useful to draw on the standards in the NICE MS clinical guideline that MS specialist nurses contribute to when making your case in support of an MS nurse post.
• Specialised and responsive services
The NICE clinical guideline states that this
specialist team should include a specialist nurse. MS specialist nurses retain a vast amount of specialist knowledge on MS that enables them to respond to enquiries relating to the specific needs of those with MS, recognise and manage the multiple symptoms, signpost to appropriate services and explain treatment options.
In a survey conducted by the MS Society 61 per cent sought information on treatment options from their MS nurse and 69 per cent sought information on their symptoms.
4Management of multiple sclerosis in primary and secondary care, page 5
http://www.nice.org.uk/CG8
“Specialist neurological rehabilitation service should be available to every
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• 72 per cent said their nurse is their first point of contact
• 70 per cent said their nurse refers them to other professionals when needed
• 53 per cent said their nurse helps them to access different care and support services.
• 71 per cent said their MS specialist nurse helps them to be as independent as they can be
• 63 per cent said their nurse helps them to take care of themselves.
• Seamless service
As a central figure in the care of a person with MS, MS specialist nurses are well placed to coordinate the network of care that is required for the effective treatment and management of MS and to facilitate joint working between health professionals.
• Encouraging autonomy and self-management
MS specialist nurses are able to facilitate self-management through the provision of information to enable people with MS to make informed decisions. MS nurses can explain the progression of MS, possible symptoms, tests and technical terms whilst referring patients to literature, newsletters and short-term orientation groups.
2. What does the National Audit
Office say?
The National Audit Office (NAO) published a report on ‘Services for people with neurological conditions’. The report assessed whether the money invested in neurology has been value for money. The report found:
•
Services are not up to scratch for people living with neurological conditions•
There is a lack of access to information•
Care is fragmented and poorly coordinated•
There has been an increase in emergencyneurological admissions to hospital
As demonstrated in the previous section on the NICE clinical guideline, MS specialist nurses can have an important role to play in:
•
providing better services for people with MS•
giving accurate information to help a personwith MS make informed decisions about their care and treatment
•
the coordination of care5 Experiences of people using MS specialist nurse services, MS Society (2011)
http://www.mssociety.org.uk/ms-resources/ms-specialist-nurses-report-january-2011
6 Management of multiple sclerosis in primary and secondary care, page 11 http://www.nice.org.uk/CG8 7 Management of multiple sclerosis in primary and secondary care, page 6 http://www.nice.org.uk/CG8
“Specialist nurses can help to improve patient care and the coordination of health and social services resulting in reduced hospital admissions.”8
“People with MS should be able to identify and contact a named contact in their healthcare with clinical expertise and who is able to respond to any inquiry on clinical problems”6
“People with MS should be enabled to play an active part in making informed decisions in all aspects of their MS healthcare by being given relevant and accurate information about each choice and decision.”7
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MS specialist nurses are often a gateway to the multi-disciplinary team. They are often the first point of contact for people with MS and have a key role in sign-posting them to other specialist services. They are a vital link between primary and secondary care. The Public Accounts Committee’s response to the NAO report recognised that:
3. What does the National Service
Framework for Long-term
Conditions say?
The National Service Framework (NSF) for Long-term Conditions identifies 11 priority areas that are necessary for NHS bodies to improve the care that they provide. These priorities were identified to address problems faced by people with a neurological condition such as, poor information and a lack of integration between services. At the heart of these requirements is the need to provide a person-centred service and supporting people to live independently. MS specialist nurses can play a leading role in reaching these aims. Through the care, support and specialist knowledge MS specialist nurses have the health outcomes of people affected by MS can be greatly improved.
4. How does the NHS Outcomes
Framework support the need for
MS nurses?
The NHS is currently assessed on its performance in five key areas. These are outlined in what is known as the NHS Outcomes Framework. Each key area has a set of targets attached to them which NHS organisations have to show that they have met. One of the key areas is ‘enhancing quality of life.’ The MS specialist nurse can help to achieve a number of the targets listed under this area. These are listed below. You can refer to this when setting out your case for the retention of your nurse.
8‘Services for people with neurological conditions’ National Audit Office (2011), page 9
“Specialist nurses can play an important role in helping people navigate their way through the range of support they need.”
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Key area: Enhancing quality of life
Targets
•
Ensuring people feel supported to manage their condition•
Reducing time spent in hospital by people with long-term conditions•
Enhancing quality of life for carers5. What does the NHS
Constitution say
The NHS Constitution sets out the level of service that people can expect to receive from the NHS, including your rights as a patient. The NHS Constitution states that you have the right “to expect your local NHS to assess the requirements of the local community and to commission and put in place the services to meet those needs as considered necessary.” This includes specialised services such as specialist nurses.
So if your local NHS attempts to remove or change the MS specialist nurse service you can use the NHS Constitution to support your case for the retention of a full MS specialist nurse service.
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Your name Your address Your Postcode MP’s name House of Commons London SW1A 0AA DateDear [insert name of MP],
RE: Multiple Sclerosis Specialist Nurse: [Name of nurse]
My name is [insert name] and I live [insert constituency and address]. As a person with MS and/or a member of the local MS Society branch I am deeply concerned to learn that that [insert name of Hospital Trust/CCG] has [cut/reduced working hours/not be replacing the specialist MS nurse post]. I have written a formal letter of complaint to the Trust and I include a copy for your reference.
It is imperative that [this post is filled with immediate effect by an MS specialist nurse/full hours are reinstated by an MS specialist nurse] who understands the specific needs of a person with MS. The lack of an MS specialist nurse is a great loss to the MS community in your constituency. MS nurses make a huge difference to the lives of people they care for. They retain a vast amount of knowledge on the condition, the best available treatments and understand the specific needs of a person with MS. The loss of this vital service will have a detrimental impact; it will lead to a reduced access to care, a lack of continuity in any care provided and an increased reliance on GPs and emergency services.
We would very much appreciate your support and participation in a meeting alongside the MS branch, the local MS community and if possible the [insert Hospital Trust/CCG name].
I look forward to your response. Yours sincerely,
Your name
• MPs can only respond to their constituent, so remember to include your full address so your MP can determine if you are their constituent
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Your name Your address Your Postcode Name of Chief Executive
Name of Hospital Trust/CCG Address
Postcode Date
Dear [insert name of Chief Executive/CCG lead]
RE: Formal complaint: Multiple Sclerosis Specialist Nurse
As a patient with MS and/or as a member of the local MS Society branch, I am extremely concerned that [insert name of Hospital Trust/CCG] has [withdrawn /reduced the hours] for the MS specialist nurse service. I would therefore like to register this letter as a formal complaint. We have learned that as of [insert date] there [is/will be] no service currently available for the [insert number of MS patients on the MS nurse caseload] that the [previous/current] MS Nurse [insert name of nurse] had on their caseload at [insert name of Hospital Trust/CCG].
OR
We have learned that as of [insert date] there [is/will be] a reduced MS specialist nurse service for the [insert number of MS patients on the MS nurse caseload] that the [previous/current] MS Nurse [insert name of nurse] had on their caseload at [insert name of Hospital Trust/CCG].
• If a review had been conducted before the decision to reduce the service or the MS nurse post has been removed and it was unsatisfactory, state the details and issues relating to the review here
• If the trust has put in interim measures and these are not adequate state the reasons why here • If you and/or the MS community have not received sufficient information on the vacant/reduced
position state this here
The NICE clinical guideline for MS states that people with MS should have access to a specialist neurological rehabilitation service and that this team should include a specialist nurse. MS specialist nurses have made a significant difference to my quality of life. Their specialist expertise and skills are invaluable to providing me with the vital care and support; accurate information; and access to life-changing treatments that I need.
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would be affected by the loss of the MS specialist nurse or a reduction in hours
I understand that you need to ensure the most cost-effective use of reduced NHS resources and for this reason it is understandable that specialist posts should be the subject of scrutiny. There are clear advantages if specialist services can be provided to the same standard but at reduced cost. However, I would stress that MS specialist nurses not only offer significant clinical benefit, but cost-effective services. Initial examination may offer short-term savings but a closer examination of the facts demonstrates longer-term financial costs.
The loss of the MS specialist nurse will result in inequity of service for the [insert name of region], which is unacceptable I would appreciate it if you could reply as a matter of urgency
Yours sincerely, Your name
CC. MS Society Service Development Officer Local MS Society branches
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MS Specialist Nurses [name of trust/PCT]
We want to gather vital information and strong evidence on the effects of cuts to the MS specialist nurse service locally. This information is anonymous but if you are happy to tell us your personal stories then please provide contact details at the end of the survey and we will be in touch to gather more comprehensive details.
1. In the last 6 months have you tried to access your MS Specialist Nurse at any of the following settings?
Clinic Appointment at [name of trust]
Clinic Appointment in a Community Setting please specify ……… ……….………
Home Visit Telephone Call
Psychology Support Group (MS nurse and Psychology)
Any other ………..
2. Were you denied access to these services?
No
I don’t know
Yes (please specify in Question 3) ……….
……….………
3. What was the specific reason given for not being able to access your MS Nurse?
Unavailable at that time and asked to leave a message Home Visits Not Available
Out reach clinics in community setting cut
Delay due to waiting time for clinic appointments increasing Other – Please Specify
……….………
4. Were you offered an alternative?
Yes No
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An appointment with a specialist nurse for another condition e.g. Parkinson’s, Epilepsy? Contact your GP
I’m not sure None
Other Please Specify
……….………
6. What was the length of time you had to wait for this appointment?
……….………
8. Have you tried to access any of the following additional support but been advised that they are not now available.
Psychology Support Group for People with MS Fatigue Management Course
Home Visits
Other Please specify
……….………
9. In the past 6 months, What impact has the [insert the reduced MS nurse service/ loss of MS nurse] had on your healthcare?
Significant Impact Some Impact No Affect Don’t Know
If you wish to be contacted to tell us your story please provide Name:
Contact Phone Number: E Mail Address:
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Information for Use in Branch Newsletters
The information below can be used (all or in part) in branch newsletters:
Help save your MS Nurse!
Example text:
[Name of trust] is currently reviewing the MS Specialist Nurse vacancy which has been left by [name of MS nurse]. We very much hope that the Trust will decide to recruit to this post so that the number of MS Nurses serving [name of geographical area] remains unaltered but these are challenging times for the NHS and so there is a risk that this will be used to save money at the Trust.
So What Can You Do to Help?
• Write to [Insert name of trust]. You have until the end of [insert date] to do so!
If you value the MS specialist nurse service now is an excellent time to make sure that the decision makers within the trust know you feel this way.
The address is:
[Name of Chief Executive] [Name of Nursing Director] [Insert address of trust]
• Write to your MP to:
• alert him/her to the issues which are of concern to you • ask them to become a member of the MS Society
• invite them to meet with you and/or others who are affected by MS • ask them to write to your local trust or local authority to
• ask them to join the All Party Parliamentary Group for MS, The APPG has an active membership of 27 MPs and peers with an interest in MS and has recently held meetings on respite care, specialist nursing and access to treatments. MPs who wish to join can contact us on campaigns@
mssociety.org.uk.
• Become a member of [Name of foundation trust].
[If the employer of the MS nurse is a Foundation trust the following information applies]
Foundation trusts are obliged to listen to their members and so this is a key way in which you can influence future decisions.
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The link is listed below:
[Insert name of foundation trust] employs the MS Nurses who cover all areas of [name geographical area]
The link for the membership form is here: [insert web link]
Or you can call them on [insert phone number] Thank you for your help with this.
If you would like any more details about how to do any of the above or would be interested in getting even more involved, please don’t hesitate to contact [Insert name of Service Development Officer] on telephone number [insert number] or via e-mail [insert e-mail address]
Contacting the MS Nurse Telephone Helpline
If you need to contact the MS Nurses, please call [insert phone number]. Please only leave:
• Your name
• A contact number
• When you will be available on that number • Where you live
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London NW2 6ND Tel: 020 8438 0700 MS Society Scotland National Office Ratho Park 88 Glasgow Road Ratho Station Newbridge EH28 8PP Tel: 0131 335 4050Multiple Sclerosis Society Wales/Cymru Temple Court Cathedral Road Cardiff CF11 9HA Tel: 029 2078 6676
MS Society Northern Ireland
The Resource Centre 34 Annadale Avenue Belfast
BT7 3JJ
Tel: 02890 802 802
MS Helpline: The MS Helpline offers emotional support and information to anyone affected by MS in the UK. MS Society documents available on the web can be requested on the MS helpline.
0808 800 8000 Freephone Helpline number
Helpline email service Open weekdays 9am-9pm (closed bank holidays)
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MS Society local branches map www.mssociety.org.uk/near-me
MS Society Local Campaigns Toolkit
http://www.mssociety.org.uk/get-involved/campaigns/campaigns-blog/2012/04/local-campaigning-toolkit-out-now
Public Accounts Committee report on services for neurology
http://www.mssociety.org.uk/ms-resources/public-accounts-committee-report
National Audit Office: Improving services for people with a neurological condition http://www.mssociety.org.uk/ms-resources/national-audit-office-report
National Service Framework for Neurological Conditions
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_4105361
NHS Outcomes Framework
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_122944
NICE clinical guideline for MS: Management of multiple sclerosis in primary and secondary care
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MS Society MS National Centre 372 Edgware Road London NW2 6ND 020 8438 0700 www.mssociety.org.uk Helpline 0808 800 8000Multiple Sclerosis Society
Registered charity numbers 1139257 / SC041990
