Baroness Hussein-Ece
To ask Her Majesty’s Government what assessment they have made of the availability and accessibility of new epilepsy medications and treatments.
Baroness Jolly (LD)
My Lords, we want all patients with epilepsy to have access to high-quality, patient-centred services wherever they live. The National Institute for Health and Care Excellence has published clinical guidance and quality standards to drive improvements in the treatment of epilepsy both for children and adults. NICE will assess the safety and efficacy of any new treatments that could be beneficial to improving the quality of life for patients with epilepsy.
Baroness Hussein-Ece (LD)
I thank my noble friend for that response. However, is she aware that the report by the Neurological Alliance The Invisible Patients highlighted a lack of care, planning and commissioning for people with neurological conditions and that for those living with epilepsy in particular there seems to be a marginalisation and a heavy reliance on parents researching new treatments, care and diets? What do the Government plan to do to improve this state of affairs and will my noble friend perhaps say something about the very promising new trials and the cannabis-based treatments that are being rolled out across the country for people with intractable epilepsy?
Baroness Jolly
The noble Baroness asked quite a few questions. I think that parents will always want to look on the internet, now that that is a fairly safe area for advice. Clinical commissioning groups are responsible for planning the majority of epilepsy care, apart from the critical care, which is handled by NHS England. Two trials of cannabidiol are taking place in the UK and plenty in the States. I am sure that NICE will be keen to approve anything that is proved to be safe and effective as soon as possible.
Lord Walton of Detchant (CB)
My Lords, in the course of my career in neurology I have treated many patients with epilepsy at all ages and in all its variants. There is no doubt that there has been a remarkable transformation in the management of all the types of this condition as a result of research in our universities and in the pharmaceutical industry. Nevertheless, there are still some patients in whom seizures are intractable and do not respond effectively even to the most modern drugs. Quite apart from what the Neurological Alliance has said, is the Minister aware that the Association of British Neurologists has identified a striking unevenness in the quality and availability of specialised neurological care throughout the country? What are the Government doing to make certain that these facilities, which are so necessary in treating this condition, are more properly and evenly distributed?
Baroness Jolly
There are four such facilities in the UK: one in Bristol, Alder Hey in Liverpool, one in London and, I am sorry, I have forgotten offhand the fourth. The Government certainly are on to this and are sympathetic to the comments that the noble Lord has made.
Baroness Ford (Non-Afl)
My Lords, can the Minister say what progress, if any, has been made to provide advice to pregnant women on the use of sodium valproate before and during pregnancy? I remind the Minister that I first raised this issue in the House in November 2010. I declare an interest as the honorary president of Epilepsy Action and a supporter of the campaign group InFact, which has done so much to highlight this issue.
Baroness Jolly
Yes, I have read the debate that the noble Baroness called in the past. Sodium valproate is a big issue for women of child-rearing age. It would have been prescribed in the first place by a consultant. I expect that she or he would advise the woman about that concern.
Lord Winston (Lab)
My Lords, would the Minister be kind enough to answer the question asked by the noble Lord, Lord Walton? I do not think he was referring to just four centres for neurological disease around the United Kingdom. Neurological damage and brain damage are major problems, particularly stroke. Can the Minister tell us what plans the Government have to improve these services, which are currently still below par?
Baroness Jolly
Certainly. As I said, clinical commissioning groups are looking at the majority of epilepsy services. On stroke, across the country there is a huge move to set up stroke care pathways. The noble Lord will know about that as well.
Baroness Barker (LD)
My Lords, are all CCGs required to commission therapeutic drug treatment programmes and to share the data nationally so that there can be shared learning on what works best for patients?
Baroness Jolly
This is a really big issue for epilepsy. As I said, CCGs commission the majority of services. NHS England commissions the specialised stuff. There needs to be a far more effective data-sharing programme to know where we stand on these issues.
Lord Foulkes of Cumnock (Lab)
My Lords, the Minister has been very sympathetic in answering these questions. What does she think about companies that make huge profits out of selling these medicaments, such as Boots the chemist and its chairman who refuse to pay taxes in the United Kingdom?
Baroness Jolly
As the noble Lord would expect, I am very uncomfortable about any large corporations, or indeed very wealthy individuals, avoiding paying their tax.
Lord Patel (CB)
My Lords, going back to the original Question on new treatments for epilepsy, does the Minister agree that the problem is that there is no single drug that is effective for the full spectrum of epilepsy? Therefore, many treatments are promoted, including cannabidiols, which have not been fully evaluated. Until a drug is accepted by the regulatory authorities in the EU and the USA, and has been evaluated by NICE, it should not be available to patients.
Baroness Wheeler (Lab)
My Lords, on commissioning, CCGs have a strategic influence and make key commissioning decisions that impact on the lives of nearly half a million people with epilepsy in England. Yet, last year’s Epilepsy Action report showed that only 10% of them had produced written needs assessments for people with epilepsy and that 70% reported that they did not have any plans to do so, either for this or for people with other neurological conditions. What are the Government doing to remedy this appalling situation?
Baroness Jolly
If the noble Baroness is referring to the joint strategic needs assessment, that is produced by the clinical commissioning groups working in conjunction with local authorities. It is up to them to make decisions about what they consider to be important.
Lord Howarth of Newport (Lab)
My Lords, if there is evidence that cannabidiol, and indeed cannabis itself, is efficacious in relation to epilepsy and other conditions, should not the Government accelerate the evaluation that the noble Lord, Lord Patel, has just called for?
Baroness Jolly
I am certainly not including cannabis in this but cannabidiol is being trialled in two places—Edinburgh and Great Ormond Street—with a view to moving it through to NICE as soon as the evidence is there and then on to treatment if that is deemed sensible.
Baroness Hussein-Ece
My Lords, when I asked my supplementary question, I mentioned that there was a heavy reliance on the parents of children with this condition researching new treatments. I meant to declare that a member of my family has this terrible condition—intractable epilepsy—and I have seen at first hand how parents try very hard to look for alternatives. One is the ketogenic diet, which was not offered or thought of until the parents pushed for it and then the child’s condition improved enormously. Some parents will not have that kind of access or know how to research it in the same way. Surely the onus is on the commissioning groups or the clinicians to suggest alternative treatments.
Baroness Jolly
Indeed. That particular diet has been approved by NICE and so there should be no problem. Neurologists should know that it is available and prescribe it.
Lord Christopher (Lab)
My Lords, I remember some years ago that a higher proportion of epileptics were in prison than in the population generally. Is that still the case and is anything being done about it? Otherwise, recidivism may be happening unnecessarily.
Baroness Jolly
My Lords, that poses a very big question. I do not know what the statistics are but I am happy to drop the noble Lord a line.