Some of you may have wondered where on earth I’ve been for the past year and a half! Well, apart from getting a new diagnosis and learning ways to manage the condition (a future blog post), I’ve been heavily involved in a group called the MS Hampshire Collaborative Working Group and a survey of MS Services that we designed and ran.
If you want to skip to the results of the survey, go straight to The Results – the Hampshire MS Survey. Read on to find out why we ran a survey, what we were looking for and how we planned to use the results to help improve local MS services.
What is the MS Hampshire collaborative Working Group?
The MS Hampshire Collaborative Working Group formed in 2017 after we came together to discuss poor access to MS nurses in our area. The group members included an MS Society external relations officer, the lead support volunteer and group coordinator from the New Forest MS Society group based in Lymington, my colleague from the Hampshire MS Support team, and me.
We decided work needed to be done to understand the lack of services in Hampshire.
After interviewing Stakeholders including NHS commissioners, we came up with a strategy for how we could start generating good evidence for a business case for an MS nurse for the New Forest area. Part of the work was to understand the state of MS Services in Hampshire, so that we could identify areas that required the most improvement and see how services in West Hampshire Clinical Commissioning Group (CCG) compared to neighbouring CCGs.
This meant that the survey results wouldn’t just help make a case for the New Forest area, but would also help any other areas in Hampshire that the survey identified as also needing improvement to make their case too.
The survey ran from January to March 2019 as both an online form and paper forms, and we reached out to about 1000 people.
The survey was distributed directly via the MS Society local groups, Hampshire MS Support, the iCan centre in Andover, Solent MS Therapy centre, Hobbs Neurological Rehabilitation Centre and in MS nurse, neurology and neuro-physiotherapy clinic appointments.
The survey was also advertised online, with distributors including the MS Trust, Shift MS, the European MS Platform, internal CCG contacts, the Hampshire Neurological Alliance, Healthwatch, and Action for Hampshire.
The survey covered not just the West Hampshire CCG area, but also Fareham, Gosport and Portsmouth, which are covered by the East Hampshire CCG. In this way, we could see if there were any big differences in service between CCGs. The West Hampshire CCG areas were divided into:
- Winchester and Andover
- Southampton and Totton
- New Forest, The Waterside, Barton-on-Sea, Bransgore, Highcliffe
- Eastleigh, Romsey and Chandlers Ford
- Fareham, Gosport and Portsmouth
The Survey Questions
We already knew about a few problems that many members of the New Forest MS Society Group had experienced, so we decided to investigate these using our survey:
1. Difficulty in attending appointments
Some people with MS in the New Forest were only being offered MS nurse appointments at Southampton General Hospital. People had significant difficulty in attending the appointments or were unable to attend because of distance or difficulties travelling there.
2. Waiting times of 1.5 to 2 years
People with MS who were offered MS nurse clinic appointments at the nearby Lymington hospital were on a waiting list of 1.5 to 2 years and climbing.
3. People with MS not on the MS Service’s books
Some people with MS were not on the MS Service’s books at all, and so had no access to an MS specialist. This applied to people with progressive MS in particular, and affected whether they could get access to MS specialists for symptom management.
Also, the first MS drug to treat primary progressive disease became available in 2019. Whilst about 20% of people with progressive MS would be eligible for this drug, the neurologists and MS nurses covering the New Forest area wouldn’t know they existed or would not be able to contact them easily
4. Long response times (or no response) from MS nurse team
People with MS who contacted their MS nurse team via email or phone either waited for a long time for a reply from the MS team, or had no response at all. This could mean that many people with MS were having to turn to their GPs, out-of-hours services, or A&E instead. It could also mean that some people with MS had to stay in hospital for issues that could have been prevented if they’d been able to contact an MS nurse.
Putting all of this together meant we could put questions in our survey that would give us a really good understanding of what it’s like living with MS in Hampshire.
The Survey Results
Click here to visit my next blog post, where you’ll find out what the survey results showed. Where there differences in access to MS services between the areas of Hampshire? Could people contact their MS nurse if they needed to? What happened when people couldn’t contact their MS nurse, or didn’t have one?
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 firstname.lastname@example.org.
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