Published: 06/10/2005 Volume 115 No. 5976 Page 22 23 24

There were high hopes that NICE guidelines and the national service framework for long-term neurological conditions would improve epilepsy services. But how much progress has been made? Rebecca Coombes reports

Dr Greg Rogers, a Margate GP with a special interest in epilepsy, has a patient whose story he believes illustrates a common problem for people with epilepsy.

'We now hold peripatetic clinics at our surgery so patients do not have to go into hospital. Before, I had one lady tell me that it took a total of eight buses to get her to hospital and back. Can you imagine?' says Dr Rogers. 'It is interesting that in epilepsy 20 per cent more men die than women.

My theory is this is because men do not get in to see their doctors.' For many years, care for people with epilepsy has been dogged by a lack of services and long waiting lists for treatment. With a shortage of skills in the primary care sector, even routine management problems such as complaints about drug side-effects were referred upwards, leaving patients with yet another wait ahead of them. It is a crucial issue for the 300,000 patients in the UK with epilepsy - three times more than have multiple sclerosis. Latest evidence suggests that only 52 per cent of people with epilepsy in the UK have seizures under control.

A 2003 epilepsy plan underwhelmed health professionals and lobbying groups with its lack of targets, monitoring and money. A Department of Health follow-up report, Action on Neurology, however, acknowledged that epilepsy patients were often unsupported and 'left feeling isolated knowing that their condition will be with them for the rest of their lives'. Action did arrive in the form of National Institute for Health and Clinical Excellence guidelines on epilepsy in October 2004, and the national service framework for long-term neurological conditions in March this year.

NICE stated that all epilepsy patients should have a yearly review, adults with recent suspected seizure should be seen urgently by a specialist, within two weeks, and magnetic resonance imaging scans, for diagnosing epilepsy, should be performed within four weeks. The NSF laid out 11 quality requirements to be met by NHS and local authorities within the next 10 years. They cover treatment, care and support for patients from diagnosis to end of life.

The aim was to redesign services to relieve some of the pressure on secondary care. With only around 352 whole-time equivalent consultant neurologists in UK - about one per 170,000 people - there was no hope of plugging workforce gaps in time to meet new standards.

But have these documents acted as levers for change? If the government is trying to achieve a shift of care into the community for patients with epilepsy, as Dr Rogers is doing in Kent, how many primary care trusts are investing in primary carelevel services?

Epilepsy Bereaved, which campaigns for improved services on behalf of families, is carrying out a survey of PCTs and strategic health authorities to find out what progress has been made. Sally Gonersall, education and awareness manager, says that a similar poll two years ago found that 'they were not doing that much'.

'We encourage people with epilepsy to get a copy of the NICE guidelines and say 'this is what I am entitled to'. Everyone should have a care plan, some named person they could contact to refer them back to hospital.

'Waiting times are a big issue in epilepsy. We should be able to arrange an MRI scan within four weeks; without a scan you can't get a definite diagnosis. There is no way this is happening. It can take months and months.' However, she is aware of some pockets of improvement around the country. 'Some trusts are working really hard on protocols. In some areas they are very on the ball and are working hard to involve people with epilepsy. The NICE guidelines say that people should be treated by professionals with clinical expertise in epilepsy. In Nottingham SHA, for example, they have just set up a paediatric epilepsy network. It means you have a network of professionals that treat people with epilepsy, and separate resources for training them to meet the standards.' However, such resources for training can be hard to come by. 'The DoH says the money should be there, but there are so many other targets to work towards. We need specific ring-fenced funding. Epilepsy just gets missed.' The Primary Care Neurology Society, which supports primary care professionals, agrees.

Secretariat director Dr Neil Bindemann says the shift of services into the community will not happen unless more GPs take a special interest in epilepsy.

'We need to train up more GPs. There are about 1,500 GPs with a special interest overall, so only a handful have a special interest in epilepsy. We want to see improvement in the availability of training. We are trying to engage with PCTs so they can see the benefits of supporting training from the point of view of the national framework.

The NSF includes certain quality requirements - for example, look at diagnosis issues.

Here you need to skill-up the workforce to recognise neurological symptoms and identify what patients need to be referred on.' One obstacle to progress is the restructuring of PCTs. 'Each PCT has a professional executive committee chair, often a GP or nurse. But when PCTs merge, these change and you need to go through the process with a new chair. You basically have to start again, ' he says.

Dr Bindemann adds that many parts of the country have some way to go before they reach the standard of service laid out in the NICE guidelines.

However, there are encouraging signs, especially in areas where committed health professionals have taken an interest in epilepsy. 'Certain places have more resources; this tends to be where GPs have taken a special interest and convinced the PCT.

We need to identify more GPs who can do this.' Dr Bindemann believes that improving communication between primary and secondary care is a pressing concern. 'We need to improve dialogue and better understand each other's agenda. What we are aiming for is the best service for patients. We need a happy medium - specialist involvement, but also the ability for patients to go to a GP and get the care and attention they need.' Dr Rogers is certain that in a few years epilepsy will become as confidently handled in primary care as diabetes.

He says there has been a vast lack of services for people with epilepsy. 'There are very few places to send people with epilepsy. If you are lucky you will see a neurologist. But they are sub-divided into epilepsy or multiple sclerosis, for example. So you only have very good care for a minority.

'There will always be a need for specialist services, but GPs have a key role in providing accessible services for people with epilepsy. The little old lady in a residential home who keeps having seizures every month... we can help her.

'Look at how much more complicated diabetes care is in some facets. But GPs have grasped that.' He points to how much management of diabetes care has improved since it moved back into general practice.

'I do not see why that can't happen with epilepsy, ' he comments.

Dr Rogers is keen to point out that GPs are just filling the gaps where hospitals cannot help. He says primary care is actually better in many cases.

'It is not like GPs are just 'having a go'. We know, within protocols, what our limits are. But if we suggest a change to someone's drug regime we can encourage and review them more frequently. You do not get six-month gaps.' He was surprised to find patients on inappropriate treatment. 'You have some people on homeopathic doses, or inappropriate anticonvulsives for their seizures, or a tablet that you have to take five times a day. How do you remember to take so many pills a day? It sounds silly, but just by rounding up the dose to twice a day you can help a patient.' He is sure that the new general medical services 2 contract and practice-based commissioning will 'open up the world' for primary care. Practice-based commissioning in particular could see services 'snowball', he thinks.

'Practice-based commissioning will mean releasing a lot of patients from hospital clinics.

National director for primary care Dr David Colin-Thomé has said he can see future care being directed by primary care: 'Secondary care is vitally important, but for the future it might be the routine management comes to primary care sector, to GPs, nurses and pharmacists with a special interest in epilepsy.' .


Dr Greg Rogers and colleagues in East Kent Coastal teaching primary care trust have been able to show what is possible with some expert knowledge, enthusiasm and relatively simple redesign of services.

In 1998, Dr Rogers was working as a hospital doctor, dealing with patients at epilepsy clinics. 'But as a GP, this was not the sector I was trained to work in... Among GPs only a few of us were up-to-date with modern diagnostics, treatments and phraseology in epilepsy.' On his return to general practice, he took a year off in 2000 to do a master's degree in epilepsy.

'With that up my sleeve I went to the head of neurosciences and the chief executive in East Kent Coast tPCT and said I thought primary care could do something to help improve services.' He pointed to the 'treatment gap' whereby patients who managed to get regular hospital treatment had a lower mortality rate than those left to primary care.

Dr Rogers' proposition was that rather than being reactive - admitting very ill people to hospital - they call everyone into the surgery and check on their progress. 'By being pro-active we are managing not just seizures but patients' quality of life. It started a chain reaction. When we called people in to see how they were, rather than saying 'I am fine' people said 'no, I am not', ' he explains.

'In the past, even if the patient had got to the hospital clinic they may have seen a clinician not too comfortable in epilepsy management.

As a GP you can act as a gentle backup. It is not rocket science. It is like with cervical smears or mammograms: you identify the people who need help.' Dr Rogers helped set up a framework for a network of GPs with a special interest in epilepsy in 2003. Now four local PCTs are working together, and there are 12 GPs with a special interest in the subject, who he describes as 'a resource for patients and staff. A doctor can say to his colleague: 'Mr X is sleepy, is it [due to] Y or Z?'. We hold peripatetic clinics at our surgery so patients do not have to go into hospital. Without the support of the PCT or head of neurosciences it wouldn't have happened. We have been very fortunate.' His practice has 160 patients with epilepsy.

'And That is just one practice. Think of the possibilities... It is very exciting.'


In Salford, the implementation of a primary care-based epilepsy service around GPs with special interests is showing promise. The Salford service was one of eight pilots supported by the Department of Health's Action on Neurology programme. Set up in 2003, its aim was to find and test different ways of working. An urgent need was to cut the waiting times to see a neurologist. DoH funding has since run out and the primary care trust has now stepped in to continue the work.

Salford PCT senior commissioning manager Waheed Saleem explains: 'The tier 2 service for epilepsy involves a GP with special interest and specialist nurse. The service aims to provide a triage and follow-up service in the community and work alongside the neurologists at Salford Hope Hospital.

'We hope the service will deflect up to 15 per cent of follow-up activity from the hospital in order for the neurologists to concentrate on the complex patients. It is also envisaged that more patients suffering from epilepsy will be picked up earlier.'

Key points

Care for people with epilepsy has been dogged by lack of services and long waiting lusts.

There have been some pockets of improvement, aided by GPs with special interests and networks of specialists.

Experts believe GPs will have a key role in providing better services for epilepsy sufferers.

To contribute articles to HSJ's clinical management section, e-mail ann. dix@emap. com

Find out more

The Primary Care Neurology Society www. p-cns. org. uk

Epilepsy Action www. epilepsy. org. uk

The National Society for Epilepsy www. epilepsynse. org. uk

Long-term neurological conditions NSF www. dh. gov. uk/PolicyAndGuidance

National Institute for Health and Clinical Excellence www. nice. org. uk