UK Rare Diseases Framework

Marion Fellows Excerpts

Wednesday 24th March 2021 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

Thank you Mrs Miller. It is a pleasure to serve under your chairmanship. Congratulations to the hon. Member for Blaydon (Liz Twist) on securing this important debate; she is a doughty fighter.

Around 437,000 people in Scotland have a rare disease. It is therefore important that the NHS and other services provide this large and diverse patient population with the best possible care. The UK Government published the new UK Rare Diseases Framework in January, listing the priorities and underlying strategic themes and detailing how the four nations of the UK will address the challenges faced by those living with rare diseases.

As part of that ongoing commitment and with the support and advice of the rare disease strategic oversight group, the Scottish Government published their final progress report, which assesses the implementation and progress against the 51 commitments in the UK strategy and their own implementation plan, “It’s Not Rare to Have a Rare Disease”.

In developing a new action plan for Scotland, the Scottish Government will work closely with the rare disease community to ensure that their needs are appropriately reflected across wider Government policy too, including mental health and social care, that all the commitments are actionable and measurable, and that the patient voice remains at the heart of the new action plan. The Scottish Government will establish a new rare disease implementation board to oversee the action plan and further details will be in the action plan due to be published this year.

Recognising a gap in Scotland’s population health charter, work is now well under way and established on a national congenital anomalies register for Scotland—CARDRISS. Once fully established, it will register babies affected by a major structural or chromosomal anomaly or recognised syndrome.

While the congenital anomalies register is still being developed, a great benefit has already been seen just by linking historical datasets to provide, for the first time in Scotland, a record of congenital anomalies. The dataset and the register are beginning to help inform the planning of services for individuals and families affected by congenital anomalies and rare diseases. Once the register is live, it will also allow NHS Scotland to support the prevention of anomalies where possible, understand the impact of antenatal screening and support research.

The Scottish Government have also made great progress in delivering genomics medicine in Scotland. An allocation of £4.2 million over a two-year period by the Scottish Government supported the transition of genomic testing of inherited rare disease from the research setting into regular genetic testing services. As a result, more families have been able to get the right genetic test and receive an often long-awaited diagnosis, enabling them to get the support and treatment they need. A well-established network of clinicians and clinical scientists has been delivering evidence-based genetic testing for NHS Scotland patients for more than 30 years. Continuing advancements in genomics medicine improve a range of factors for rare disease patients, including diagnosis, access to treatment and co-ordination of care.

In Scotland, access to new medicines for rare, very rare and end-of-life conditions is significantly increased through a new ultra-orphan medicines pathway, introduced in October 2018, ensuring that those with the rarest diseases will get faster access to new treatment where appropriate. In the light of the benefits seen from the use of genomic medicine, the Scottish Government are increasing their investment in this area to £2.3 million, as announced in the new Scottish Budget. The investment will support the implementation plan and the plan will set out actions aligned with the three pillars in the strategy—diagnosis and personalised medicine, prevention and research. The Scottish Government will work closely with NHS Scotland laboratory genetic services to continue their approach to embed genomics in routine healthcare. Families and patients need to know that wherever they live in the UK, their Government are committed to the framework and to making it work. Does the Minister agree?

Covid-19: Government’s Publication of Contracts

Marion Fellows Excerpts

Tuesday 9th March 2021 Commons Chamber

[Edward Argar]

My hon. Friend is absolutely right. The people of this country would expect the Government’s No. 1 priority in March, April and May of last year to have been, as it was, to move heaven and earth to get the PPE that was needed in a very challenging environment to the frontline. I think that what he was alluding to in the NAO report was paragraph 18 of the summary, which said:

“The NHS provider organisations we spoke to told us that, while they were concerned about the low stocks of PPE, they were always able to get what they needed in time.”

That is not necessarily an NAO conclusion, but it is a reflection of what it was told and cited in this report, so he is right to highlight it.

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

The Ministerial Interests (Emergency Powers) Bill, introduced by my hon. Friend the Member for Midlothian (Owen Thompson), which would require Ministers to answer questions in Parliament about any personal, political or financial connections they have to companies given government contracts, will now go forward to a Second Reading. I hope the Government will support it, as this Bill should help with the Government’s present court and publication difficulties. Does the Minister agree that it is crucial that we get greater scrutiny and have stringent regulations in order to increase transparency on the issuing of Government contracts and to ensure that the right people or companies are getting those contracts during these difficult times?

[Edward Argar]

I am grateful to the hon. Lady. I have highlighted just how important I consider transparency to be. This is the second time in two weeks, rightly, that I have been answering at the Dispatch Box, so I would argue that there is scrutiny there. On her final point about that private Member’s Bill, I know that the Government will look at that Bill as they would look at any private Member’s Bill, in the usual way.

Covid-19 Vaccine Update

Marion Fellows Excerpts

Thursday 4th February 2021 Commons Chamber

[Nadhim Zahawi]

My hon. Friend and I have had conversations about this matter because he is a great champion of his constituents. He will be aware that there has been a huge amount of work to step up vaccination services in Medway in recent weeks. Each primary care network site receives its own supply, and work has been carried out with the local CCG to ensure that the vaccine supply aligns with the number of registered patients in the priority cohort groups—groups 1 to 4. When some sites progress through their supply more quickly than others, we work with them to ensure that supplies are replenished as quickly as possible so that they can continue to vaccinate the most vulnerable. We are keeping a close watch on my hon. Friend’s area because, as he quite rightly points out, it has gone through some difficulties. I reassure him that the latest numbers I have for the Kent and Medway STP show that 86.3% of over-80s have had the first dose.

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

The Leader of the House and the Minister talk of the beneficence of this Government. Yesterday, soon-to-be Baroness Davidson asked Scotland’s First Minister whether she would accept armed forces help with vaccine deployment, in spite of huge increases in the roll-out in Scotland. As Scotland contributes to the UK armed forces—as do all parts of the UK—is it not time to stop using this dreadful pandemic to portray the deployment of our armed services in such a cynical and divisive way?

[Nadhim Zahawi]

I am grateful for the hon. Member’s question, although I am slightly surprised because it is the United Kingdom’s armed forces and the United Kingdom’s vaccine that are being deployed, and I hope we can celebrate that. [Interruption.] I see the hon. Member for Nottingham North (Alex Norris) nodding across the Dispatch Box—and I think he is smiling underneath that mask as well.

Covid-19: Vaccinations

Marion Fellows Excerpts

Monday 11th January 2021 Commons Chamber

[Nadhim Zahawi]

My hon. Friend will know that I have engaged with colleagues to dig deep into the issues their constituents may have with the vaccination programme. I am very happy to look at any cases she has. Through the combination of standing up hospitals, the primary care networks supported by community pharmacies and now the national vaccination centres, all residents within the four cohorts should be captured by the primary care services that know their communities really well. In case they are not, we are also engaging heavily with local government. One of the lessons of test and trace is to ensure that we engage with local government, because it knows its residents really well.

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

Before the recent spending review, the SNP called for an uplift in the NHS in England to bring per capita spending in line with Scotland, and thus provide billions to support the roll-out of the vaccine and build up capacity. The Treasury announced less than a third of what we had asked for. Does the Minister expect NHS England to be able to keep up with the vaccination demand, despite this lack of investment?

[Nadhim Zahawi]

The head of NHS England, Simon Stevens, was before the Public Accounts Committee today and I am sure that the hon. Lady will look at his answers. Suffice it to say that the Chancellor has made £6 billion available for the NHS family to make sure we deliver and deploy as fast as we can to the most vulnerable cohorts in our country.

Covid-19 Update

Marion Fellows Excerpts

Thursday 26th November 2020 Commons Chamber

[Matt Hancock]

Yes, absolutely—I can give both those assurances. Across Sussex, case rates are at 120. They do need to come down. Like my hon. Friend, I would like to see Sussex get to tier 1 as soon as possible, and we will keep talking to the local area. As I said earlier, all directors of public health have been invited to discussions and consultations with the public health team. That feedback fed into these decisions, but we have to make sure that those conversations continue. The key message to everybody across Sussex and in the Weald, in particular, is that if we all stick together and follow the rules, we know that we can get this virus under control, and that will then lead directly to the lifting of restrictions, which we will regularly review.

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

The Secretary of State will be aware of reports on the Oxford vaccine that the sub-group that suggested 90% effectiveness was due to a manufacturing error, rather than being a planned protocol. It included fewer than 3,000 people and did not have any participants over 55. Does he agree, therefore, that further research is required to verify the efficacy of the lower dose in all age groups before it can be adopted as a standard regimen?

[Matt Hancock]

Questions over the interpretation of the data in the clinical trials are rightly for the Medicines and Healthcare Products Regulatory Agency, which will assess these clinical trials and will only approve a vaccine for use if it is effective and safe.

DHSC Answers to Written Questions

Marion Fellows Excerpts

Thursday 19th November 2020 Commons Chamber

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

Does the Minister accept that questions are sometimes tabled to Departments in response to issues raised by our constituents, and that by failing to engage with Members in this way—I understand all the reasons why it is taking longer—it is ultimately the public who suffer the consequences?

[Edward Argar]

I am grateful to the hon. Lady for her question. I refer her to the answer I gave to my hon. Friend the Member for Dudley South (Mike Wood). We recognise both the increased workload on hon. Members from their constituents and the importance of timely answers to written questions in helping them to discharge that obligation to them.

Covid-19 Update

Marion Fellows Excerpts

Tuesday 10th November 2020 Commons Chamber

[Matt Hancock]

I am happy to look at all those constructive suggestions. Maybe I can also take this opportunity to put on the record my thanks to the vaccine taskforce and to Kate Bingham personally for the leadership that they have shown in being able to procure the 340 million doses that they have achieved—I know that the whole country is grateful for the 40 million doses of the Pfizer vaccine in particular—and the work that they have done.

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

What update can the Secretary of State give the House on the new strain of coronavirus identified in mink in Denmark? Aside from the travel restrictions now in place from Denmark, what steps are being taken to stop any new outbreak?

[Matt Hancock]

The hon. Lady raises an incredibly important point. We acted very fast, including working with the Scottish Government and the other devolved Governments, to take the action that we did at the end of last week. We are concerned about this outbreak. I am concerned about the fact that this virus has become virulent across the mink population, and I think that there is an international case, on public health grounds, for addressing the question of mink farming, which we banned in the UK two decades ago. It was due to come to an end in Europe in 2023 anyway. People will have their own views on animal welfare grounds—I certainly have mine—but clearly, on global public health grounds, there is a case for doing everything we can to stop the retransmission of this virus into an animal population and then back again, which can lead to the sorts of mutations that we have seen. We will do everything we can to keep people safe.

If you will indulge me, Mr Deputy Speaker, I should also put on the record my thanks to and admiration of the Government of Denmark, who have also responded to this very quickly. Our actions should in no way be interpreted as a criticism of the Danish Government, who have acted very fast; it is a painful economic decision that they have taken very swiftly to cull their mink population. We are merely acting to keep this country safe.

Covid-19 Update

Marion Fellows Excerpts

Thursday 15th October 2020 Commons Chamber

[Matt Hancock]

I want the time that London is in tier 2 to be as short as possible. The best way we can achieve that is by us all pulling together and following the level 2 rules. In terms of exiting from level 2, the cross-party London group set out a very clear set of criteria on the need to go up a level, including reaching 100 per 100,000 cases on average across London, which we are just about to breach. It is now working with us on what the exit might look like. I totally agree with my hon. Friend on the importance of setting that out to give people the motivation that, if we all pull together and sort this out, we will get out of these measures and people can live their normal lives a bit more.

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

Scotland made use of a summer of lower cases to get its public health-based contact tracing system up and running. It is reaching over 90% of cases and contacts. Can the Secretary of State tell us by when the UK Government hope their Serco track and trace will reach even 70% of community contacts?

[Matt Hancock]

The way we do it in England is that the national system and the local systems work together. The first proportion, the majority of cases, are dealt with by the national system and then the local systems come into action. Between them, they reach a very high proportion of cases. It is that teamwork that is the best way forward.

Coronavirus

Marion Fellows Excerpts

Wednesday 17th June 2020 Commons Chamber

[Matt Hancock]

First, I would rather not see any new infection coming to the UK. Secondly, on a point of policy, the approach that we are taking is to ensure that we protect this country from the incidence of disease coming in from abroad, and also to look at travel corridors when we can be confident that we can have that travel without reimporting the virus.

[Marion Fellows (Motherwell and Wishaw) (SNP) [V]]

The chief executive of the Nuffield Trust has written:

“Even if a second wave is prevented, resuming routine hospital, primary care and dental services…is going to be all but impossible without a vaccine.”

The Secretary of State will be aware that losing such vital services will simply lead to lives being lost through a variety of other causes, so what discussions has he held with healthcare professionals about a medium to long-term strategy to allow vital services to resume under the changed conditions of the new normal?

[Matt Hancock]

This is an extremely important point. Infection prevention and control within the NHS is vital, but it also leads to constraints on how the NHS can operate, and it is one of the main things that we are worried about as we get the NHS restarted.

Health and Social Care

Marion Fellows Excerpts

Thursday 16th January 2020 Commons Chamber

[Marion Fellows (Motherwell and Wishaw) (SNP)]

It will come as no surprise to you, Madam Deputy Speaker, that I intend to dwell on health and social care issues as they relate to my constituents in my own country of Scotland.

Before I do so, however, I should like to remind the House that just because edicts and statements are issued from the Government Benches, it does not mean that they are factually correct. Indeed, I must say that the pejorative language used by Conservative Members, including those representing Scottish seats, when discussing Scotland and its SNP Government, is unjust, mostly fallacious and paints a picture of healthcare in Scotland that neither I, my family nor my constituents recognise. In Scotland, the SNP Government are carrying on with the day job and have abolished prescription charges, which helps many folk in Scotland. To know that they can have the medication they need without worry is a fine thing, and it can save precious NHS resources further down the line.

Satisfaction with the NHS in Scotland remains high. In 2018, 95% of patients rated their overall experience of cancer care positively. [Interruption.] The hon. Member on the Government Front Bench may shake his head, but I can vouch for that, as my husband had cancer treatment in Scotland. Some 86% of patients rated their full in-patient experience positively, and 83% rated the overall care provided by their GP surgery as good or excellent. Scotland’s patient safety record is among the best in the world. Over the past five years there has been a decreasing year-on-year trend in the rate of MRSA and C. diff infection.

Scotland led the UK by introducing a mental health waiting times target. In the Scottish Government’s 2019-20 programme, the budget for mental health increased by £15.3 million, up by nearly 22%. This is the first Government in Scotland to have a ministerial post dedicated to mental health. The SNP is always looking to improve services for all Scots, which is why the Government are undertaking a review of mental health legislation in Scotland. The review aims to improve the rights and protections of persons who may be subject to existing legislation, and to remove barriers to those caring for their health and welfare.

This Tory Government aim to emulate Scotland by abolishing parking charges at hospitals. Since 2008, when the SNP Government abolished charges in NHS car parks, patients, visitors and staff have saved over £39 million.

The Nuffield Trust, an independent health think-tank, has said that although the 3.2% increase in NHS England’s budget is welcome, it must not detract from the reality that the English health service cannot adequately function or improve without significant investment in NHS capital and the workforce. Perhaps NHS England, through adequate Government funding, could emulate NHS Scotland and offer the same bursary to student nurses as we do in Scotland, where from next September nursing students will benefit from a £10,000 bursary, which is double the proposal for nurses training in England.

Of course, nursing students receive free tuition in Scotland. The benefits of this policy are easy to see, with nursing student numbers in Scotland increasing for seven years in a row. Compare that with a 30% drop in applications in England. How difficult will it be for this Government to achieve their promise of 50,000 extra nurses, or is it actually 19,000 fewer nurses? I am not sure; I am a bit confused about that figure. Perhaps I am not the only one.

On the question of social care, in 2011 the Scottish Government became the first in the UK to pay the real living wage to staff, including all NHS workers. In 2002, free personal care for the elderly was introduced by the Labour-Lib Dem Executive, and I give them credit for that, but that was against the wishes of the Westminster parties, which used it to cut social security funding for older people in Scotland—as ever, Westminster never misses an opportunity to cut Scotland’s budget. [Interruption.] Now the SNP, in government, has extended free personal care to all those under 65 who need it, and from the next Parliament the Scottish Government will work to abolish social care charges. [Interruption.]

[Madam Deputy Speaker (Dame Eleanor Laing)]

Order. The hon. Lady must be heard. There are indeed a lot of Members here this afternoon, but we will have no noise.

[Marion Fellows]

Thank you, Madam Deputy Speaker.

The Westminster Government would do well to look at and emulate many of the forward-looking, fair, equitable and progressive policies that originate in Scotland. One example is that, through the Social Care (Self-directed Support) (Scotland) Act 2013, everyone who uses social care services can now control their individual care budget.

The Prime Minister promised to

“fix the crisis in social care once and for all … with a clear plan we have prepared”.

The UK Government have failed to propose a Bill, a clear timetable or costings in their manifesto to address the social care crisis in England. The Tories have been in government for a decade and overseen the social care crisis. According to Age UK, there has been a £160 million cut in public spending on older people’s care in the last five years, despite rapidly rising demand. About 1.2 million people over the age of 65 did not receive the care support that they needed, and cuts have increased the pressure on unpaid carers.

I encourage the Secretary of State to look to and adopt the innovative measures that the Scottish Government have introduced in Scotland, to benefit those who live in England and use its NHS and social care provision.

[Madam Deputy Speaker (Dame Eleanor Laing)]

I am delighted to call Dehenna Davison to make her maiden speech.