Epilepsy: New Treatments

Debate between Baroness Jolly and Lord Winston

Monday 2nd February 2015 Lords Chamber

[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.

Medical Innovation Bill [HL]

Debate between Baroness Jolly and Lord Winston

Friday 12th December 2014 Lords Chamber

[Lord Winston]

My Lords, as far as patient safety is concerned, it is clear that there is a need to keep a record so that other patients do not receive a misguided innovative treatment following an unsuccessful one. That is very important.

[Baroness Jolly]

My Lords, Amendment 5, moved by the noble Lord, Lord Hunt, and supported by the noble Baronesses, Lady Wheeler and Lady Masham, and the noble Lord, Lord Turnberg, seeks to require the registration of innovations that are carried out under the Bill as part of the steps that a doctor should follow when taking a responsible decision to innovate. The Government have listened carefully to the concerns expressed by noble Lords and several key stakeholders, including the Royal College of Physicians, with regard to the collection of data resulting from innovation. We agree that it is vital that doctors are able to share learning about innovation that results from the Bill. However, we do not think that a requirement to record the results of innovative treatments should be included on the face of the Bill. Requiring doctors to record the results of innovative treatments in order to demonstrate that they have not been negligent, as Amendment 5 would require, would impose requirements that go beyond the current Bolam test of negligence. We are reluctant to impose requirements additional to those in the existing law as this may risk deterring doctors from innovating.

A stand-alone clause that would require doctors to register the results of innovative treatment would widen the scope of the Bill to cover all innovation. This Private Member’s Bill is not the right vehicle to make provision that would relate to all innovation. Broadening its scope in this way risks the Bill becoming the receptacle for a host of measures on innovation that are unrelated to the subject of clinical negligence. What is more, such an amendment may lead to confusion as doctors associate the Bill with clinical negligence and may therefore wrongly assume that the recording of innovation is tied in with the test of clinical negligence under the Bill. This additional burden may dissuade a doctor from innovating. It would be unclear to those doctors who choose not to innovate under the Bill whether they would be required to register the details of their innovation on the registry or whether the provision applies only to those innovating under the Bill. If the provision applied only to those innovating under the Bill, this would create an anomalous position for those acting under the Bill. More importantly, the act of putting something into legislation does not guarantee that doctors will adhere to it. We need to focus on incentivising doctors to use the registry and make such a registry work for their needs. It would be unwise to put something into legislation that does not work for doctors and that they would therefore not be able to adhere to.

I am sorry, but I have lost my place.

Health and Social Care Bill

Debate between Baroness Jolly and Lord Winston

Monday 27th February 2012 Lords Chamber

[Baroness Jolly]

My Lords, I had not intended to speak because everything had been said. However, the noble Lord, Lord Walton of Detchant, made a point that I think is worth picking up on. I declare an interest as chairman of the Specialised Healthcare Alliance, which works with people with rare and complex conditions. These conditions are commissioned by the NHS Commissioning Board, while the conditions referred to by the noble Baroness, Lady Finlay, in Amendment 63A are intended to be commissioned by CCGs. Clearly, people are really anxious about these commissioning arrangements. They are based on geography; they are relatively small in number, but not tiny; they are geographically sparse; and very often GPs will not actually see these conditions very frequently.

The noble Lord, Lord Walton, asked whether any thought had been given to sweeping these conditions in with the rare and complex conditions, and to have them commissioned by the NHS board. I am not suggesting whether this is a good or a bad thing, but I think that those with these conditions and the organisations that represent them might be glad to engage in a dialogue on this to see whether it is the appropriate way forward. There is certainly a lot of anxiety about what is currently happening. If my noble friend would give us some indication of whether that could be looked at, that might alleviate some concern.

[Lord Winston]

My Lords, I hope that in summing up the Minister will address the general issue of genetic disease. The noble Lord, Lord Walton, referred to one specific single gene defect but there are some 6,000 single gene defects and they are often very complex. Most of them are fatal diseases and many of them affect children. A few sufferers of single gene defects live to a young age and some occasionally live into middle age. However, one problem that we already find in the health service is that provision for the care, treatment and diagnosis of these patients and for the counselling of their families is often very deficient, depending very much on whether funding is available.

An example is the work that has been going on in pre-implantation genetic diagnosis, which can prevent a child who might die from one of these diseases being born through the selection of a suitable embryo. Of course, this is not a cheap procedure but in terms of financial efficiency for the health service it is very much less expensive than the complex care that might be involved for a child with, for example, advanced male-type muscular dystrophy. Hitherto there has been a huge difficulty in getting these services through individual PCTs because they think in the short term and are on a budget from year to year. Therefore, collaboration seems extremely important not only in relation to these rare cancers, which of course are immensely important, but for a great number of diseases which are extremely distressing. I am sure that the Minister will fully understand and be greatly sympathetic to the fact that the families involved are immensely distressed by these diseases. They are often very puzzled that they may be carrying one of these gene defects and they find it very difficult to get answers to what are quite complex problems. There really does need to be proper provision for them through collaboration with other authorities.