In my last blog post, I introduced you to the MS Hampshire Collaborative Working Group and our survey. We wanted to know what level of care people with MS are getting from their local MS healthcare team. Does it depend on where you live? and what happens if you don’t have good access, or any access at all, to an MS nurse, neurologist and specialist clinics?
Read on to find out what the survey told us about MS Services in Hampshire!
The analysis has now been completed and the resulting report has been successful, showing differences and shortfalls within the area. It is forming part of the conversation with the West Hampshire NHS Clinical Commissioning Group(CCG) right now, to help create a business case for improving MS services where you live.
The response we got to the survey was outstanding – 354 of you filled out the survey. Usually, you get approximately 10% of people who see the survey actually filling it out. For our survey, we had closer to 32%!
A massive thank you to all participants, and especially to members who helped us circulate and promote the survey during January to March 2019.
Also a massive thank you to all the professionals that helped make this survey happen, with a particular shout out to the Southampton MS nurses, who were involved in the survey design as well as the survey distribution to participants, and to the data analysts. You know who you are, you absolute gems!
We had a nice spread of responses across the area we surveyed, split between the areas of:
- Winchester and Andover
- Romsey, Eastleigh, and Chandlers Ford
- Southampton and Totton
- New Forest, The waterside, Barton-on-sea, Bransgore and Highcliffe
- Fareham, Gosport and Portsmouth
17.6% of you had primary progressive MS, 15.8% secondary progressive MS and 38.4% relapsing remitting MS, with about 4 in 5 of you diagnosed over 5 years ago. About 7 in 100 of those with relapsing remitting MS are not taking a DMD.
Worst Areas: The New Forest, Winchester and Andover
We found overall that those who lived the New forest and surrounding areas have poorer experiences of MS services than the other areas who took the survey. Winchester & Andover was the second worst. We’ll go into more detail in a minute.
The New Forest area has the highest percentage of people with progressive MS. We know that those of you with progressive MS don’t have the same access to MS services, including MS nurses, as those who have relapsing remitting MS, who are eligible for DMDs.
For those of you living in areas of Southampton, Totton, Romsey, Eastleigh, Fareham, Gosport and Portsmouth, you had, overall, a much better experience of MS services and had good connections and interactions with your MS nurse team.
The area of Fareham, Gosport & Portsmouth, was a particularly interesting area to compare to, because it is controlled by a different CCG, and also has access to community MS nurses. The MS nurses in this area did double as many referrals for you for specialists like neuro-physiotherapists and for clinics like bladder and bowel clinics, pain clinics and fatigue management courses than your GP or other healthcare professional combined.
Do you have an MS nurse?
The New forest had the highest percentage of people who have no contact with an MS nurse, at 23% having no contact. The next worst was Winchester, with 22% of you having no contact with an MS nurse.
Fareham, Gosport and Portsmouth came out the best for having contact with the MS nurse team with just 9% of you not having any contact, followed by the Southampton and Totton area which had just 11% of you not having any contact. The remaining area of Romsey, Eastleigh and Chandlers Ford was in the middle, with 14% of you having no contact with an MS nurse.
How many of you have seen an MS nurse in the past 18 months?
Nice guidelines state that ideally, you should be seen by an MS specialist, be that a neuro or MS nurse, every 12 months. We looked at whether you had seen an MS nurse in the past 18 months.
For those of you who have an MS nurse, Winchester came out as the worst area for seeing an MS nurse regularly, with only 46% of you having seen one in the past 18 months.
Of those that have an MS nurse in the New Forest area, 67% of you, so about 2/3rds of you had seen an MS nurse within 18 months, which is almost the same as the Fareham, Gosport and Portsmouth area. This coincides with the time when the number of clinics being run in Lymington hospital had increased temporarily by 4 times as many (thanks to the MS Society and your local volunteers!), so any issues in the New Forest might be disguised by this.
The areas with the most people who’d seen their MS nurse in the past 18 months were Romsey, Eastleigh, Chandlers Ford, Southampton and Totton, with around 72-76% of you having seen an MS nurse in the past 18 months.
Referrals to MS specialist services and clinics
The New Forest had the highest percentage of people who use a GP rather than an MS nurse for referrals to courses and specialists for things like bladder and bowel clinics, neuro-physiotherapists, fatigue management and pain management.
What do you do if you have an exacerbation or want to see an MS nurse?
If you wanted or needed to see an MS nurse, the New forest came out top for people having to go to their GP to ask for a referral to an MS nurse, rather than already being in the system and having an email or phone number to ring the MS nurse team directly.
Winchester & Andover had the worse number for knowing how to contact an MS nurse if you wanted to – 1 in 5 of you didn’t know how to contact an MS nurse.
If you have an exacerbation in your symptoms, the New Forest came out top for people going to their GP first for this, rather than seeking the specialist guidance on symptom management or DMDs from their MS nurse.
Both Winchester & Andover, and the New Forest and surrounding areas, had the highest percentage of people who had attended GP, district nurse or an NHS walk-in centre because you couldn’t contact an MS nurse.
Getting to an MS nurse clinic
In terms of getting to an MS nurse clinic, when we created the survey we thought that some of you in the New Forest and surrounding areas might be having trouble because most of the MS nurse clinics were being run so far away in Southampton rather than being locally in Lymington Hospital. In the survey, some of you told us that you indeed preferred clinics at Lymington hospital, and that Southampton is too far for some of you to travel for an MS nurse appointment.
Only 1 in 10 of those of you living in Winchester are using the Winchester Hospital for your MS nurse appointments, with about 1 in 4 using Southampton. This might be because if you are on a DMD, you have to see one of the Southampton-based nurses who do more clinics in Southampton than Winchester.
About 1 in 5 MS nurse appointments are undertaken at home overall. The area of Gosport and Fareham is covered by community nurses who can manage her own diaries and tend to be able to offer home visits regularly. Not surprisingly, this area had the most people seen at home, with 34% of you seeing your MS nurse at home. Winchester and Andover also had a high number of people seeing their MS nurse in their own home – 27% of you. This compares to just 4% of you in the New Forest and surround areas and 5% in Romsey, Eastleigh and Chandlers Ford, neither of which are served by a community nurse.
What MS nurses did for you
We know that MS nurses have more specialist knowledge than GPs. They are also familiar with referring people with MS to specialist clinics and courses such as neuro-physiotherapy, bladder and bowel clinics, and fatigue management clinics.
Lots of you told us how you feel that your MS nurse can manage your MS better than your GP:
“They provide reassurance by email that you may otherwise book a GP appointment for”
“my m.s. nurse understands, the problems I have far better, than my GP. I also have longer to discuss my concerns and worries, far better than seven minutes at the doctors!”
“She referred me to a fatigue management course after talking to her about how I was struggling at work. My GP would not have had the understanding of my condition or the knowledge of the course to help.”
“I was having XXXX issues and the MS nurse referred me to the XXX team who having seen me wrote to my GP to explain the best medication to treat my problem. Another time I had lower back pain. I was referred by my GP to a physio but whatever they suggested didn’t work. I spoke to the MS nurse and they referred me to neuro physio who sorted the problem out within a couple of weeks. Thank goodness for neurophysiology but more to the point I’m so very lucky to have access to a marvellous MS nurse team.”
“Discussion about pros and cons of pain killers, antispasmodic and neuralgia drugs. GP does not have time to explore the options.”
“Calling her about symptoms prevented me going to my GP when I needed to take a week of work due to fatigue and other symptoms.”
“If I have had an infection such as a UTI I can get advice from them rather than a doctor, helps speed improvement up.”
For those of you who did have access to an MS nurse, overall people were very very happy with your nurse and what they did for you. Some of you took the time to write about this:
“When I contracted a virus and was bedridden and getting very worried about how serious my condition might get, my MS Nurse gave me advice and support over the phone. Her guidance and reassurance was invaluable.”
“They are always available to assist or advise. It is a huge comfort to have them.”
“As I have Tysabri infusions every 4 weeks ran by a great bunch of MS nurses their constant support I feel as one of the lucky ones.”
“I can call and leave a message and I’m called back promptly for advice/ information”.
“Just being there with the correct advice”
“When I have been tearful and depressed when I have relapsed it has helped a great deal when she has visited me at home and had time to listen and not up against a few minutes in a clinic. My GP does not know much about MS, I feel and I hardly see him anyway in Clinic so no continuity!”
“If have any concerns I talk to MS Nurse and she helps me solve any problems.”
“In the past I have contacted my MS nurse first when I have felt anxious about a symptom when I have been having a relapse. The MS nursing team guided me through the process of starting with a DMT.”
“My MS nurse is XXXX – she is absolutely amazing. She helps me understand that I need to stay hydrated and eat more and because of this when I feel dizzy I know what to do, rather than go to my GP. I would be lost without her.”
Admissions to Hospital
12 of you have had 2 or 3 unplanned overnight stay at hospital in the last 2 years due to your MS or MS-related issues like falls, a relapse, or bladder, bowel or respiratory issues. And sadly, 5 of you have had an unplanned overnight stay in hospital more than 4 times in the past 2 years.
Interestingly, of those of you who’d had an unplanned overnight stay more than twice in the last two years:
- none of you had had any contact with an MS nurse during your stay
- apart from 2 people, all of you had never been referred to MS specialists such as neuro-physiotherapists or specialist MS clinics such as bladder and bowel clinics
- only 3 of you would contact your MS nurse if your symptoms got worse, with over half of you going to your GP instead.
So, it might be the case that not having access to an MS nurse has meant you’ve been more poorly than if you’d had access to the specialist knowledge and help from a nurse. Having contact with an MS nurse might have prevented your condition from getting bad enough to need to stay in hospital.
Further Information and The Reports
If you would like to:
- get further information or discuss the findings with us
- get a copy of the Discovery Phase report (which details our strategy for creating evidence for a business case that improves MS services, and work that informed the survey design)
- get a copy the Survey Phase report
then please do get in touch with me by emailing [email protected].
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