At the MS Trust we believe that everyone with MS should have access to an MS nurse. MS specialist nurses provide clinical advice and support on most aspects of MS. They often act to co-ordinate services for people with MS, referring someone on to a doctor, therapist, or other appropriate services. Many people with MS consider them to be a lifeline but, sadly, we know this is not the case for everyone.
Gaps in services
A report published by the MS Trust in 2016 found that there is a shortfall of 37 MS specialist nurses across the UK, with the most significant shortages in England and Scotland. 64% of people with MS live in an area where MS nurses have case loads in excess of the MS Trust sustainable caseload figure of 358 per whole time MS nurse. Not surprisingly, we have been contacted by people who say that they do not have an MS nurse and who would like to know if there is anything that they can do. The answer depends on why there isn’t an MS nurse in their life. For example;
- Some people were diagnosed some years ago when there were fewer nurses in the UK and none at all in their area. There may be one now but, for some reason, no contact has ever been made. You can read in our newsletter Open Door, how an MS nurse in a newly created post in south Cumbria had to seek out people with MS in her area.
- Some people lose contact with the MS team. Maybe they had a nurse before but, for some reason, contact was discontinued or has been lost.
- Posts may be vacant or the nurse may be on maternity leave or sick leave. In larger groups, the other MS nurses will try to cover the caseload but, if it’s a one nurse group, there is likely to be a gap in services. There are still 42 MS nurses who work on their own.
In these cases, it is a good idea to look at our map of MS nurses to see if there is a nurse in your area now. If you click on the flag nearest you, you should reveal the contact details for the MS nurse including which areas they cover and how you can make contact with them. This might be self referral (if you are already diagnosed with MS, you can contact them direct) or it may be through your GP, neurologist or other health professional. We try to keep the map up to date but if you any spot errors, please let us know.
We’d encourage you to go ahead and make contact if you need the advice of an MS nurse rather than waiting for the system to find you. If you’ve never seen an MS nurse or not seen one for ages, you might need a review of your MS to see if there are any treatments or other measures that might help. Sometimes symptoms have increased bit by bit and it’s time to seek advice. Sometimes new treatments have been developed which you may not be aware of.
If you can’t find an MS nurse in your area, give the Information Team a call on 0800 032 3839 or 01462 476700 or email us on firstname.lastname@example.org
We can’t magic up an MS nurse if there isn’t one but sometimes we can advise on what’s going on and whether there might be a way forward for you.
We are also contacted by people who say that the service from their MS nurse did not live up to their expectations. There can be many reasons for overstretched services, for example:
- Many MS nurses have a very high caseload. Our report published in 2016 showed that more than 25,000 people with MS live in areas where their specialist nurses are supporting at least twice the sustainable number of people with MS. Consequently, it seems unlikely that someone with a high caseload will be able to respond to a phone message or email or provide a clinic appointment as quickly as someone with a third as many people to look after.
- Some nurses work part time so delays in responding are inevitable on non-working days.
- Some nurses will have to cover for colleagues who are on maternity leave or sick leave or on holiday. In a team of two MS nurses, this means an instant doubling of their caseload.
- Some MS nurses have been asked to work on the wards for one or more days per week to cover for a shortage of staff in other areas. The service for people with MS is often affected.
- People in some areas will have an MS nurse closer to them than people in other areas. A quick look at the map of MS nurses shows that they are few and far between in Wales and the north of Scotland. However, sometimes there is good news, such as when a post was created in the Western Isles for people who previously had to use the service in Glasgow.
In addition, there may be other reasons why someone has been disappointed with the service that they received. For example:
- Some nurses will have been longer in post and have more experience of MS than other nurses.
- Some issues just can’t be solved and nurses are not miracle workers. Perhaps someone has tried a range of painkillers but is still in serious pain. They may be disappointed that “nothing more can be done” but, if all the options available have been tried, the MS nurse may be unable to do any more.
- Nurses are not all powerful (unfortunately) and will be constrained by drug licensing laws, local prescribing guidelines and the availability of other services that they might like to refer someone to (perhaps a pain clinic or rehab service).
- MS nurses are human beings and so are people with MS. We all gel better with some people than others and, as in any aspect of life, we find it easier to build good relationships with some people than others. It can help to prepare well for an appointment or phone conversation so that both of you can make the best use of the small amount of time that may be allocated (the nurse may be just as frustrated as you that the system only allows perhaps 15 minutes to review all of your MS). Going in with a list of priorities can act as a focus for discussion
If someone is unhappy with the service they have received, they can ask to transfer to another MS nurse, if there is one. Also, they may prefer to visit their GP for help with some issues. Sometimes it is appropriate to have a chat with PALS (Patient Advice and Liaison Services) who can help to resolve concerns or problems with NHS services. This service applies to England but there are equivalents in the other countries of the UK.
Many MS nurses do a fantastic job and go way above what is required of them. For many people they are their first port of call to answer questions or refer them on to other services. We would like to celebrate their achievements. If you have an MS specialist nurse, physiotherapist, occupational therapist, or other MS professional who’s made a real difference for you, why not share your story on Facebook or Twitter?
How the MS Trust supports MS nurses
One of the MS Trust’s aims is to ensure specialist services for all and we are trying to make this a reality by:
- Providing training to nurses who are new in post – we run a week long course covering many different aspects of MS care and all new MS nurses attend this course.
- Running study days and master classes to help nurses keep up to date and to provide networking opportunities.
- Running our Annual Conference for MS nurses and therapists with key speakers and workshops over 2 ½ days.
- Helping MS nurses to evaluate their services and demonstrate what works best to meet the needs of people with MS and their families.
- Supporting areas where a post is at risk. The evidence gathered above may be important when a case has to be made to keep or expand the service.
How you can help
You can help us support MS nurses through donations. Thanks to the help of our supporters over the last few years, we have been able to step up our vital work fighting to keep our MS nurses in post. Changes happening in the NHS now mean that specialist MS services are at still at risk, with funding being lost or re-assigned.
During MS Awareness Week we often work especially hard to raise the profile of all MS specialists and the difference they make. This year we're asking people to share their stories about the difference their MS nurse has made to them.
The ADAMS project
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Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
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Roxy talks about her MS journey and the importance of sharing her own experiences to ensure that others don’t face the same challenges when receiving a diagnosis.
Lis' MS journey: one woman and her bike
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In May 2022, Lis will be heading off on her 5,000 mile cycling challenge. She shares how the idea came about and discusses why the support of the MS Trust was invaluable following a multiple sclerosis diagnosis.
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