Provision of Epilepsy Services

Baroness Northover Excerpts

Tuesday 30th November 2010 Lords Chamber

[Baroness Northover]

I, too, thank the noble Baroness, Lady Ford, for initiating this very important debate. I know that she has a strong and long-standing interest in this area, as, clearly, do other noble Lords. My noble friend Lord Howe has a very strong interest in this area and it was a conflict of interest which led to him asking me to take this debate rather than taking it himself. He retains his extremely strong interest in provision of services for epilepsy.

As the noble Baroness, Lady Ford, gently alluded to, I have my own experience in this area through two close relatives. One of them developed epilepsy in his late 50s and faced the trauma of potentially losing his career and his life’s work. He needed to take mind-altering drugs in order to prevent that loss. The other is blissfully unaware that she has developed epilepsy as an offshoot of corticobasal degeneration. It is therefore down to me and her carers to ensure that, vulnerable as she is, all possible care is taken of her.

Noble Lords have painted a compelling picture of why we must do better for the 450,000 people living with epilepsy in this country. We have heard from the noble Lord, Lord, Lord Patel, that it is not a straightforward, simple disease with one name and one set of manifestations and causes, but that there are a variety of these. However, as the noble Lords, Lord Patel and Lord Stevenson, and others have said, there is a great deal of understanding of epilepsy, so theoretically things should be going well. Given the good understanding of how to improve services and support for neurological conditions, then, why is that not happening?

There have been dramatic changes, as the noble Lord, Lord Stevenson, says, with regard to the understanding of the disease. My relative who could potentially have lost his career had extraordinarily good treatment at Queen Square and is now living, in the same way as the noble Lord’s son, a normal life. Given all of that, why are things not working as they should? The national service framework for long-term neurological conditions and the NICE clinical guidance on epilepsy both offer a blueprint on how to deliver high-quality service to people with epilepsy, yet, as we have heard, this does not necessarily translate into good practice. We can see that in the epilepsy action paper and the all-party group report on the issue.

It seems to us that it becomes even more important that the reforms proposed in the NHS White Paper help to deliver the desperately needed improvements in services. How might that be achieved? First, we seek to bring decision-making much closer to patients and clinicians. It is not, pace the noble Lord, Lord Stevenson, simply down to the Department of Health deciding what has to happen with regard to a specific disease. It is important that the patients, the carers and the clinicians who know what is happening are better able to commission the kind of care that they need. That needs information—it is important that far better information is available within the health service—and it needs pathways to be spelt out to GPs so that they can commission appropriately.

The aim of reorganising the health service so that it brings this process closer to the patients and clinicians is that the commissioning should be more effective. That will be the test of it, and we will need patients and patient groups involved in it to ensure that it is taken forward and monitored and that the possibilities are fully exploited. Under the proposed new system, people should also have much more information about services, more choice about their treatments and more influence over how healthcare is shaped in their community. Local HealthWatch organisations will ensure that views and feedback from patients and carers feed into future decisions about shaping local health and social care.

We have to ensure that GP commissioners have the skills and awareness that they need to make these decisions. There has been a lot of discussion, to take up the point made by the noble Lord, Lord Smith, on the size of the consortia and what makes sense. Obviously, those commissioning may have limited experience—in the case of, say, neurological diseases. It is extremely important, therefore, that there are guidelines on what they should look at and how to access the best support. Again, it does not make sense simply to lay down in each particular disease that someone should do this, that and the other.

The noble Lord, Lord Darzi, developed NHS Evidence, which is self-evidently necessary. It is an online resource with information on treatment, on pathways in different diseases, drug treatments, and so on. This was extremely welcome—why it was not there in the first place, I do not know. It should have been developed years earlier, in my view. It is a reflection on the health service that has been up to now been driven by the Department of Health.

In addition to that kind of support, the NHS Commissioning Board works with a range of expert organisations to make sure that the GP leaders get the right support. It sets commissioning guidelines, commissions quality standards from NICE and encourages approaches that promote joint working between health and social care. This is extremely important here. It also makes sure that there are ongoing resources so people can tap into the latest information and the latest research. All those things are extremely important for the consortia’s commissioning.

It is obviously very important to see how this works in practice and that is why we have recently announced the Pathfinder programmes. In effect, these are pilots of GP consortia which are keen to make faster progress under existing arrangements and want to take on additional responsibility for commissioning services. The scheme will enable GPs working with other healthcare professionals to test the different designs on how this is best done. It is extremely important that we all learn from that. Expert groups, such as the ones that have been represented here, should monitor what is happening, see how it is working out in practice and inform us so that we can put into place for the country as a whole something which works as well as possible.

As I have mentioned, it is extremely important to have information. The noble Lord, Lord Patel, referred to it not being known how many cases there are in particular areas. That surely should be a thing of the past. I hope very much that the promotion of information within this system should help to counter that. For example, last week the NHS Atlas of Variation in Healthcare was published. It is very controversial—some areas seem to be doing very well and others are embarrassed that they are on the “Today” programme defending their terrible record. Actually, that becomes a lever for trying to improve things, by asking what is being done differently somewhere else and what can be learnt from that, because we do not want to find ourselves publicly in that position again. It is a very useful way of trying to address the health inequalities noble Lords have talked about.

The long-term conditions delivery support team is already working to develop skills and awareness. It has been developing a new commissioning resource pack in this area, bringing together information on good epilepsy services, so there are sources of information that will help the GP consortia.

On specialists, this again is an ongoing concern that has run through many different diseases, at many different times, right through the history of the NHS and prior to that. It is extremely important that cases get referred to the right specialists and that the specialists are there to take them forward. That may mean that a paediatrician, for example, recognises that they need to refer the patient to somebody who is an epilepsy specialist as well.

I see that I am running out of time, despite all the extra time that we were given. I am very sympathetic to the idea of support for specialist nurses. My own contact with them in relation to my mother shows how very useful they are.

I was asked about the epilepsy drug sodium valproate. We are acutely aware of the situation of the families. The authorised product information on this drug for prescribers contains advice about its safety. Taking up the point of the noble Baroness, Lady Ford, I will definitely take the idea of reviewing this back to the department. We obviously have to make sure that women are guided by very good advice on pregnancy.

My noble friend Lady Hussein-Ece asked a series of questions. She was concerned about what had happened in relation to the emergency services in one case. We understand that if an epileptic fit is confirmed in a 999 call, there should be an appropriately trained medic in the ambulance. If it is not flagged up, there may be a problem. Some of the staff who go out in ambulances would have the ability to cope with such a case; others would not. However, all staff are trained to deal with epileptic cases, so the dreadful case that the noble Baroness mentioned should not, one hopes, recur. However, we always need to learn and move on.

The diet that the noble Baroness mentioned is available on a limited scale. It suits some children but not others. The most important thing, here and everywhere else, is that there should be good research. Areas like this should be evaluated very carefully to make sure that best practice can be extended and that, where something is not seen as being appropriate, it is properly evaluated.

On carers, I am sure the noble Baroness, Lady Pitkeathley, is well aware of the coalition’s commitment to linking social care and health, and to supporting carers. There will be additional resources for GP training to increase GPs’ awareness and understanding of carers’ need for support.

I am running out of time but, in conclusion, I stress that the Government do not and never will have all the answers. We have a vibrant and active charitable and voluntary sector. We depend a great deal on the advice that is fed in and the way that areas are flagged up. Paul Burstow, my colleague in the other place, will meet the epilepsy charities soon to discuss the opportunities that the new agenda poses for them. We are keen to involve people, and keen that the reforms of the NHS and social care should make sure that patients and clinicians are better able to seek the kind of assistance and care that they need. We hope that will help to bring standards up to those that we know exist for many, but far from all, who are being treated for epilepsy.

House adjourned at 9.54 pm.