Batten Disease

Debate between Seema Kennedy and Jim Shannon

Monday 22nd July 2019 Commons Chamber

[Seema Kennedy]

I completely agree with my hon. Friend. I have answered debates here and in Westminster Hall about the medical treatments for rare diseases. To reassure both patients and their families and Members of this place, we need to ensure that the review of NICE processes is robust and transparent.

[Jim Shannon (Strangford) (DUP)]

Less than half of all available rare disease treatments licensed by the European Medicines Agency are reimbursed in the UK for patients to access freely through the NHS, compared with 93% in Germany and 81% in France. With respect, Minister, the parents of those young children with Batten disease have seen those figures as well. They are desperate for the medication for their loved ones, so will she agree to an urgent review of the funding for such treatments for UK citizens?

[Seema Kennedy]

We are putting record amounts of funding into the NHS, but I would rest again on the independence of the NICE process and the fact that it is experts and clinicians who are making these decisions. I agree that these are dreadful decisions and it is very hard for us to make them, which is why we rely on that expert advice. I would say to the hon. Gentleman that other jurisdictions are not always a good comparison.

Cystic Fibrosis Drugs: Orkambi

Debate between Seema Kennedy and Jim Shannon

Monday 10th June 2019 Westminster Hall

[Seema Kennedy]

I will talk about the interim measures, but I think the more important thing that we need to grip is having a permanent solution for everybody living with cystic fibrosis.

Throughout the negotiations, which are rightly being led by NHS England, the Government have been crystal clear that Vertex must re-engage with the NICE process. I know that hon. Members have questions about that process, and I will try to address some of the points that have been raised. The hon. Member for York Central (Rachael Maskell) raised more detailed points for me to consider; if I do not address them, I will write to her with more detail, but there are some points about the NICE process that I will address later in my remarks.

[Jim Shannon]

Would it be possible for the Minister to give her Department’s and her own opinion on the buyers’ group that is seeking to buy similar drugs from Argentina for cystic fibrosis? Have the Government given that possibility any consideration?

[Seema Kennedy]

I shall turn later in my speech to that specific avenue that some sufferers have gone down.

Medical Cannabis under Prescription

Debate between Seema Kennedy and Jim Shannon

Monday 20th May 2019 Commons Chamber

[Seema Kennedy]

I will come on to timelines later in my remarks. NHS England is currently obtaining patient consent and scheduling the necessary interviews with clinicians, decision makers and their patients. The first interviews were held today.

I want to touch briefly on devolved matters. Health is a devolved matter, but officials across the UK have been working closely on the development of this policy. The law is exactly the same in all four countries of the UK and only funding is devolved. Members have said that clinicians might be nervous about prescription and that we need to improve training. I will talk about this later, but the training package that has been commissioned from Health Education England will be made available across the UK.

[Jim Shannon]

The Minister has heard my comments on behalf of my young constituent, Sophia Gibson, who is getting medicinal cannabis through the trust area. May I suggest that, if that is how it is done for my constituent in Northern Ireland, it could be done for people across the rest of the United Kingdom through their trust area or non-governmental organisations—wherever the responsibility lies?

Age-related Macular Degeneration: NHS Funding

Debate between Seema Kennedy and Jim Shannon

Tuesday 9th April 2019 Westminster Hall

[Seema Kennedy]

I will respond to the question that the hon. Lady raised in her intervention later on in my remarks. We know that regular sight testing can lead to early detection of these conditions. In his capacity as chair of the all-party group, the hon. Member for Strangford (Jim Shannon) referred to the importance of regular eye tests, given that, combined with early treatment, they can prevent people from losing their sight. That is why we continue to fund free sight tests for people over 60 and, alongside NHS England, are fully supporting the aims of the UK Vision Strategy to improve the eye health of people in the UK. A mark of the priority that the Department places on eye health is the inclusion in the Public Health Outcomes Framework of an indicator of the rate of avoidable blindness, both as a headline measure and by main cause, to highlight and track the direction of travel at national and local level.

The hon. Member for Enfield, Southgate has raised a number of wider important issues for the eye care sector. Many of those were highlighted in the report from the all-party parliamentary group on eye health, “See the Light”, which was published last summer. The Department welcomes this report and, along with NHS England, is carefully considering the key recommendations.

The hon. Gentleman said that eye clinic capacity was insufficient. I of course share any concerns about delays to treatment. National guidance is clear that all follow-up appointments should take place when clinically appropriate, and patients should not experience undue delay at any stage of their referral, diagnosis or treatment. To help address that issue, two key initiatives—“Getting it Right First Time”, led by NHS Improvement, and the elective care transformation programme, led by NHS England—have been set up to consider what can be done to ensure that patients do not suffer unnecessary delays in follow-up care. My Department is following that work closely.

The hon. Gentleman also asks that we establish a national target to ensure that patients requiring follow-up appointments are seen within a clinically appropriate time. As I am sure he will appreciate, the intervals for follow-up appointments will vary between different services or specialties, and between individual patients, depending on the severity of their condition. That is why all follow-up appointments should take place when clinically appropriate. For patients who require further planned stages of treatment after their “referral to treatment” waiting time clock has stopped, treatment should be undertaken without undue delay and in line with when it is clinically appropriate and convenient to the patient to do so.

The hon. Gentleman and the hon. Member for Battersea both raised the matter of a national eye health strategy. The Department takes sight loss very seriously. We are working with NHS England to ensure that the commissioning and development of eye services are of high quality and sustainable. I look forward to meeting the hon. Lady to discuss all matters relating to vision and sight loss.

CCGs are responsible for commissioning all secondary care ophthalmology services, and are also available to commission primary care services such as minor eye services and monitoring, in the community, to meet identified need. It is therefore right that the planning and commissioning of high-quality eye care services that meet the needs of the local population should happen locally, not at a national level.

The hon. Member for Enfield, Southgate, also referred to the national ophthalmology database, and asked that it be expanded to collect data on AMD. Data is currently collected on cataracts as part of a five-year programme funded by NHS England. I understand that at an earlier stage the programme funding panel considered expanding the focus, but decided that the focus should remain on cataracts in that time-limited audit.

I recognise the hon. Gentleman’s concerns and thank him for raising the matter. We are working incredibly hard, alongside NHS England, Public Health England and other partners, to ensure that eye care policy is focused both on preventing disease and, where disease develops, on ensuring that there are high-quality, sustainable eye care services for people across the country. I hope that the significant focus on effective treatment, prevention and AMD research that I have outlined means that he can reassure his constituents that we take AMD incredibly seriously. Maintaining good vision throughout life is of the utmost importance, especially as we grow older.

[Jim Shannon]

It might be helpful to give the Minister the report of the inquiry by the all-party parliamentary group on eye health and visual impairment. Perhaps she would agree to meet the officers of the all-party group, so that they can advance that case.

[Seema Kennedy]

I very much look forward to reading the report of the APPG that the hon. Gentleman chairs, and to sitting down with him in due course.

My Department remains committed to preventing sight loss and to ensuring that anyone and everyone living with AMD has access to the very best treatment and support.

Question put and agreed to.