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When patient with first fit has long wait for outpatients

Case

history

JM is a 17-year-old who was seen 10 days ago by a colleague after suffering a probable first epileptic fit. This had been witnessed by her friend and she was referred to a neurologist at that time. Today she explains that she has suffered seven further seizures since then and is worried about hurting herself during an attack. You advise her that you will chase up her appointment as soon as possible but are advised by the neurologist's secretary that it is likely to take four weeks for her to be seen. Dr Richard Stokell discusses.

What expectations are reasonable for the patient in this scenario?

Although NICE guidelines for epilepsy will not be available until the summer, a two-week wait for first-fit clinics seems to be becoming accepted after SIGN guidelines 2003.

It does therefore seem this patient is

waiting longer than one would expect although 15 per cent of new patients with epilepsy were found to wait more than six months in 20021.

What are the options available here?

In light of this fact, you have four options available – none of them ideal. You could:

lAccept the hospital's rather slow response

lMake a fuss about seeing the patient

lCommence anticonvulsant medication before her specialist opinion

lOffer support in other ways.

If you are hesitant to make a fuss, remember it is unusual for epilepsy to present with such frequent seizures. We sometimes feel very uncomfortable about insisting on our patients being seen urgently and worry about the responses of consultants to our requests. Ask yourself why you feel uncomfortable about asking to discuss the case directly with the consultant.

I usually give brief details to the secretary and ask the consultant to ring back, leaving word with receptionists that they will be ringing and that an interruption is OK.

Interim measures to support the patient consist of excluding obvious underlying causes such as alcohol abuse and drugs that lower the seizure threshold, such as antidepressants.

Patient safety can be improved if they are mostly not left alone at this stage. Advice against swimming, cycling and bathing alone in the house is probably worthwhile. If she is learning to drive she must stop and inform the DVLA.

Psychological support at this stage comes from a sympathetic and optimistic approach. Information is key to reassurance – what will happen, how will it be investigated, what causes are likely, how long will I need medication.

What about commencing treatment in primary care?

Decisions to commence medication should be based on these considerations:

lHow confident are you in your diagnosis of epilepsy and its type, given that you do not have specialised investigations available to you?

lWhat is your level of confidence in tailoring drug treatment to the type of epilepsy and patient group and titrating dosage?

lHave you sufficient experience of using the drugs and their potential side-effects?

lWhat are the dangers of not treating the girl's epilepsy for a period of a few weeks?

What are the dangers of epilepsy?

Good data on the risks of epilepsy comes from the National Sentinel Clinical Audit of Epilepsy Deaths 2002. This suggests a premature death rate two-three times higher than the general population, with 1,000 epilepsy-related deaths occurring each year.

About half of these were considered to be 'sudden unexpected deaths in epilepsy' (SUDEP). SUDEP has been found to relate closely to poor seizure control, with those who have not been fit-free for the previous 12 months having a 23-fold increase in risk2. In more than half of these cases deficiencies in care were identified.

Juvenille myoclonic epilepsy can present as tonic-clonic convulsions in this age group and the typical history of jerking movements, especially in the upper limbs with normal consciousness, may only be revealed with close questioning. Sodium valproate is usually the drug of choice for this group in whom carbamazepine tends to increase fit frequency.

What is the GP's role in this disorder?

In general, GPs are not encouraged to take over all the care of epilepsy but our new contract recognises our role as central to their care. Referral of new cases for assessment at a specialist epilepsy clinic is recommended. This also has the potential benefit of involving the patient and family with a specialist nurse and self-help groups.

It is proposed we make a register of epileptic patients and review them annually, assessing fit frequency, drug tolerance/ compliance/efficacy, and reviewing psychological and social factors. Where we find good control, that is fit-free patients, we need to advise about activity including driving and work and offer pre-pregnancy counselling.

Where poor control is uncovered we should look for compliance issues and trigger factors such as alcohol and other drugs before considering a change of medication.

We then need to decide if optimal doses of the present monotherapy have been tried, sometimes with the assistance of blood levels, before considering switching drugs, adding a drug or referring back to the specialist clinic.

Attitudes in general practice

What are the benefits of embracing this group of patients in a planned-care setting?

For a small amount of extra effort we have the opportunity to contribute to substantial improvements in mortality. Currently levels of control in the community fall far below those quoted as being possible.

Studies suggest 75 per cent of epileptics can become fit-free. To achieve this we need to equip ourselves with an adequate knowledge of four or five different drugs, follow guidelines regarding their use, review our patients once in a while and use secondary care appropriately. There is potential for uncovering large numbers of poorly controlled patients with epilepsy and generating a high level of referral to struggling epilepsy services.

The development of intermediate clinics with GPs with a special interest to look after this group is one potential solution.

Richard Stokell is a GP in Merseyside

Key points

lDon't be afraid to make a fuss if you feel a patient is waiting too long

lGPs have an important role in managing epilepsy, even though it is sometimes seen as the domain of the specialist

lBetter control of epilepsy can save lives

References

1 National Sentinel Audit of Epilepsy Related deaths 2002, Appleton et al

2 Nilsson et al (1999)

Useful websites

www.SUDEP.org

has full details of findings of the audit of epilepsy-related deaths and useful links

www.SIGN.ac.uk

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