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Sharing Care - Multiple Sclerosis

The long term medical management of Multiple Sclerosis lies between Neurologists, Neurology Specialist Nurses, General Practitioners and Neurological Rehabilitation specialists.  This page suggests how, at each stage, care can be shared.  There are few rules in chronic disease care and these are suggestions, not guidelines.  The National Institute for Health and Clinical Excellence has issued full guidelines for the management of MS, available here.

 

1.Diagnosis

After presentation with suspicious symptoms or signs the GP refers the patient to Neurology.   Ideally the letter should indicate the symptoms and signs, the GP’s degree of suspicion, the degree of urgency, and what the patient has been told.   A Consultant Neurologist will see the patient as requested.  The patient will be assessed and investigated, as an in or outpatient, as necessary.  If the diagnosis is confirmed it will be discussed with the patient.  An Outpatient letter or Discharge letter confirming the diagnosis, and giving details of the discussion with the patient, will be sent to the GP.  Blood tests and scans can be carried out and a lumbar puncture and neurophysiology may be carried out as a day-case.  We caution against requesting MRI without the appropriate history, examination and discussion because MRI is not a screening tool, and there are frequent false positives and negatives.

Once the diagnosis is confirmed all patients will be offered referral to the Gloucestershire MS Specialist Nursing Service  and the phone number of the local and national MS society.  After diagnosis the patient can return to GP care with support from the MS Specialist service as required.

2.Relapse/Remission

If a disabling relapse is reported to Neurology/MS support nurse, patients can self-refer to the MS Specialist Service.  In this case the team will discuss patients’ treatment options and advise GP on management and outcome.  That may include day case iv or oral steroids.

Following relapse, referral to appropriate community rehabilitation service is often helpful. 

When a disabling relapse is reported to GP. After confirmation of the relapse (by history and examination) the GP may choose to treat the relapse themselves and/or consider referral to the MS relapse service.  Steroids are given in order to hasten recovery from relapse.  Steroids can be given intravenously or by mouth.  Referral to MS Specialist Service gives access to consultant opinion, multidisciplinary services and day case iv steroids on ward 6a GRH or medical day unit CGH.  Should a patient require admission  (eg through complex medical need or lack of home support) the Neurology team can be contacted by phone call or fax to the MS Specialist Nursing Service.  Patients can be treated at home using oral methylprednisolone tablets 500mg daily for five days.  If the relapse is entirely GP managed, the hospital team would like to be notified.

>If there are two or more disabling relapses in two years the GP may wish to refer their patient to Neurology for consideration of disease modifying therapy (see below).

3. Accumulation of Disability

Patients may accumulate disability, either through transition to the progressive form of the illness or through incomplete recovery from relapse.   Components of disability can be treated in General Practice.

Spasticity

The treatment of spasticity is complex.  In general, the first step is to look for a cause. Causes include posture, seating, pain and sites of infection. The aims, in treating spasticity, are to improve function, alleviate pain and prevent complication.  After excluding treatable causes assessment by Physiotherapy and Occupational therapy may be helpful.  Finally oral medication (baclofen, dantrolene, tizanidine, diazepam) can help.  It is important to be aware of the risks of oral therapy.  The risks are fatigue, confusion and reducing “useful" (ie the tone that helps keep a patient mobile) spasticity.

Pain

It is important to identify the cause.  Pain can arise from the disease itself and its complications e.g. constipation/ spasticity.

Bladder symptoms

Exclude urinary tract infection. Remember that incontinence may be a consequence of impaired mobility. Referral to the local community continence nurse may be the most useful step.Measurement of urinary residual by ultrasound determines the next approach.

Residual <100 mls.Oxybutinin (2.5-5mg tds) or tolteridine (1-2 mg bd) may be helpful.

Residual >100 mls. Referral to community continence nurse for training in intermittent self catheterisation is advised.  Nocturia can be treated with nasal desmopressin (10-40 microg intranasally) spray.  If there are continuing problems despite above, consider referral to Urology for consideration of suprapubic catheterisation.

Speech/swallowing

Refer to community SALT team for assessment and advice.Consider effects of medication (eg antispasticity agents) on swallowing.If swallowing is irretrievably impaired and there is a risk of malnutrition consider PEG feeding.

Cognitive impairment

Consider effects of medication.Refer to Neuropsychology at GRH for assessment.It may also be appropriate to refer patients to dementia team, psychiatry or occupational therapy.

Epilepsy

Seizures occur in 3% of patients with MS.Treatment is with conventional anticonvulsants, e.g. carbamazepine, valproate.  The GP may wish to initiate treatment themselves or refer back to neurology.

Fatigue

Fatigue is common.It is important to look for other causative or exacerbating factors such as infection, pain, sleep disturbance, depression and hypothyroidism.In relapse we advise initial rest followed by a paced and gradually increasing return to usual activity.  Amantadine 100mg bd or Modafinil 100mg bd given orally can be helpful.

Depression

Depression is common in MS.Please see NICE guidance for assessment and management of mild, moderate and severe depression.

4.Disease Modifying Therapy

At the time of writing the disease modifying therapies,  Interferon and Glatarimer are funded locally for patients with relapsing remitting disease (see below), two disabling relapses within the last two years, and no contraindications.  Also included are those with progressive disease and continuing significant relapse.  Please refer to Neurology if the above criteria are fulfilled. In the event of frequent severe relapses patients may also wish to consider azathioprine, mitoxantrone, and natalizumab (Tysabri)). 

For patients on interferon and other disease-modifying therapies, management is coordinated by the white matter team (Dr Martin and MS specialist nurses).

They will continue to review the patients at regular intervals and advise on blood tests/complications.

5.Pregnancy

When planning a family, patients may wish to discuss the implications of the illness, for themselves and for their family.  Please refer to Neurology or MS Support Nurses.

6.Useful phone numbers

MS Society: 0208 438 0700

MS Helpline:0808 800 8000

MS Counselling Line: 0208 422 2144

GRH MS Specialist team: 08454 226 404. (Please note that this is not a 24 hour service)

Cheltenham and North Glos MS Society: 01452 862 822

Gloucester and Forest MS Society: 01452 762 060

7. Useful websites

MS Society (UK); www.mssociety.org.uk/

MS Society, Cheltenham Branch: www.mssociety.org.uk/cheltenham

MSActiveSource:  www.MSActiveSource.co.uk

NICE (MS Guidelines): www.rcplondon.ac.uk/pubs/books/ms/

MS Trust: www.mstrust.org.uk/default.jsp

Site for patients considering disease modifying therapies:www.msdecisions.org.uk

Useful MS links:

http://www.msdecisions.org.uk

Charities

http://www.mssociety.org.uk/ms-support/professionals/gps (section specific to GPs)

www.mstrust.org