Service overview multiple sclerosis

This service aims are:

• For all People with Multiple Sclerosis (MS) in Herefordshire to have access to the MS nurse service within a variety of settings
• To provide a responsive service to the changing needs of the person with Multiple Sclerosis (pwMS), their families and carers
• Provide health promotion for people newly diagnosed with MS
• Undertake the management of people with MS at and after diagnosis
• Provide education for carers of the person with MS and also health and social care staff
• Management and co-ordination of the disease modifying medication
• Palliative care and management of people throughout the whole of their disease trajectory leading to being severely affected by MS

Multiple sclerosis is the leading cause of disability in young adults. People are typically diagnosed at the age of 30 years. Over time, MS normally becomes progressive and can  cause complex disability in some patients. It is not life threatening and consequently the management of MS is a long-term team effort.

MS is a variable condition. However, the majority of patients will develop a range of fluctuating symptoms, both physical and cognitive, which take time to assess and manage. Additionally, significant levels of coexisting conditions such as depression are found in any MS patient population

Anticipated numbers of people with multiple sclerosis in the National population is: 100-120 cases per 100,000. Within Herefordshire, with its population of approx 180,000, the actual Multiple Sclerosis population in the county is 400, which is higher than other counties.

Accessibility / Acceptability

The service is not age specific, any person with MS can be reviewed.

The ratio of male to females with MS is 1:3, females being dominant, therefore the service is for any gender and adapts to the changing culture.

Referrals are accepted from any adult above the age of 18 years, going through or who has a diagnosis of MS, or an MS Mimic such as Devics disease and Hughes syndrome.

Population served

The MS Nurse Service responds to the whole county of Herefordshire. However, as people in the Powys area have access to the Neurologists in the County Hospital in Hereford, if any of these patients are diagnosed with Multiple Sclerosis then the Nurse Service reviews these patients.

Age: the pwMS need to be aged 18 years or above. If a child was diagnosed with MS the MS nurse would need to work with child health support services to support their needs.

The service is only for people within Herefordshire or for those people who have a Herefordshire Neurologist. The service will not accept anybody without a diagnosis of MS or who is not going through diagnostics for MS or an MS mimic.

Generally our criteria is as follows:

Anyone who is going through a diagnosis of Multiple Sclerosis, or anyone with a probable or clinically definite diagnosis. However there are a few diseases that mimic Multiple Sclerosis, and management of these is approached in the same way, therefore the MSSN also review people with Devic's Disease and also Hughes Syndrome. The service is also for family members of the person withMS as well as their carers.

The team

Multiple Sclerosis Clinical Nurse Specialists (CNS) Hereford has a small nurse team of two nurses.

• Del Thomas Lead MS CNS
• Elaine Evans MS CNS

We see all people with a confirmed diagnosis of CIS, MS and Devics. Usually we get a referral from your diagnosing Consultant, but will accept referrals from yourself or your GP/Physio.

When newly diagnosed, you will be seen within 2-4 weeks as a home visit by Del Thomas and Gilly Burdon the Lead Neuro OT. After this first appointment you will then be seen in a clinic, in a location of your choice.

Usually we see people 6 or 12 monthly. However, this isn’t set in stone and we will adapt to your needs.

MS Nurses can support in many ways, such as:

• Helping you understand what MS is and how to live well with MS.
• Review your symptoms and suggest treatment options.
• Refer to other services such as: Physios, Occupational Therapy (OT), Councillors, Speech and language therapists, Wheelchair services, Dieticians.
• Support with benefit applications.
• Liaise with housing departments.
• Provide a home phlebotomy service to monitor the bloods, for people on DMT`s
• Provide home visits for: injection training or people with complex needs.
• Assist with work issues, provide reports for employers.
• Discuss and screen for Disease Modifying Therapies.
• Review people who have been admitted to hospital.
• Liaise with maternity services.
• Offer information days for people newly diagnosed with MS twice a year.

The MS Nurses are the main point of contact for PWMS and their families. This team doesn’t discharge anyone from their service, you will remain on follow up as: MS is a long term condition, as your support should be.

Multiple Sclerosis Occupational Therapist (OT)

We have 1 MS OT in Hereford: Claire Jones.

Claire will accept a referral from anyone with a confirmed diagnosis of MS or any healthcare professional. Usually she see people for a short burst of treatment then discharges you once completed. Often you will have many referrals to Claire over the years, depending on your needs.

Clare offers a service that specialises in fatigue management, handwriting assessments, feeding assessment and work related issues. Once you have a referral with Claire, she will also check if you need any equipment that might make living a little easier.

Fatigue is the most common symptoms of MS (see the Fatigue Section), Claire will help you learn ways of managing the fatigue more effectively, so you can remain at work or have the energy to cook the evening meal.