Patients with Rare Diseases

Deidre Brock Excerpts

Thursday 9th March 2023 Westminster Hall

[Deidre Brock (Edinburgh North and Leith) (SNP)]

It is a pleasure to serve under your chairship, Mr Sharma. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. I was certainly not familiar with some of the details that we have heard today. I look forward to the Minister’s response.

A rare disease is defined as a condition that affects fewer than 1 in 2,000 people, but that statistic in isolation is misleading. It is estimated that over 412,000 people in Scotland have a rare disease—more than one in 10. Rare diseases might be individually rare, but collectively they are not uncommon. The hon. Member for Strangford reminded us that we must not look at the statistics simply as a series of numbers, because those numbers represent people and the family members around them—a very important point. He shared details of conditions that he is familiar with, and some that he is personally acquainted with through colleagues.

The hon. Member also spoke of the importance of the four nations working together. He will be pleased to hear that the Scottish Government worked closely with the other devolved bodies and the UK Government to produce the new UK rare diseases framework, which builds on the 2013 UK strategy for rare diseases. He is always an optimist, and he reminded us that there is hope, given the work being done on these issues. He brought our attention to the smart suit, which I had not been aware of. That sounds like a really positive development, so I look forward to hearing more about that and the differences it can make to the people who will be able to make use of it.

The hon. Member for Blaydon (Liz Twist), chair of the APPG on rare, genetic and undiagnosed conditions, spoke of the challenges for those with rare conditions, and described how they wait for years for a correct diagnosis. She spoke about the lack of recognition and diagnosis, which leads to further difficulties accessing vital support for housing and benefits—a really important point.

[Jim Shannon]

I thank the hon. Lady for making that point. I mentioned that it takes, on average, almost five years for a diagnosis. I am sure she will ask the Minister to get the diagnosis timescale reduced to a manageable period, because it is unacceptable to have to wait five years.

[Deidre Brock]

It is indeed unacceptable. I am sure the Minister will address that point. I thank the hon. Member for that intervention.

The hon. Member for Blaydon mentioned the emotional strain experienced by those with rare conditions and their families. Again, that was an important point. She also highlighted the need for longer-term funding for research and development. I hope the Minister will be able to give us good news on that front, because that is a crucial issue. Short-term funding dries up and leaves researchers high and dry when they could be progressing a method of addressing the conditions that people suffer from, which is what we would all like.

Rare Disease Day, marked on the last day of February each year, brings the rare disease community together to advocate with one voice, and to raise awareness of the impact of these often overlooked or unknown conditions, most of which do not have large advocacy groups or funding grants. Today marks an important opportunity to draw attention to them in Parliament, so I again congratulate the hon. Member for Strangford on securing the debate.

The long-term goal of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by a rare disease. As hon. Members have highlighted, rare diseases are often life-threatening or chronically debilitating, and can have a wide-ranging effect on a person’s life, impacting education, financial stability, mobility and mental health. As the hon. Member for Strangford said, 75% of rare diseases affect children, and more than 30% of children with a rare disease die before their fifth birthday—a tragic statistic that must strengthen our resolve to improve our knowledge, understanding and treatment of rare diseases.

As has been pointed out, for those living with a rare disease, a diagnosis is crucial to understanding how they can move forward with their life, treatment and prognosis. However, sadly it takes on average almost five years to receive an accurate diagnosis of a rare disease. It is therefore vital that all those living with a rare disease get the right diagnosis faster, and can access co-ordinated care and specialist treatment. That is a core objective in the Scottish Government’s rare disease action plan, published in December. It sets out how the Scottish Government will implement the priorities of the UK rare diseases framework. It was developed in close collaboration with the rare disease community to ensure that their needs are appropriately reflected across wider policy on, for example, mental health and social care.

The plan includes a number of objectives on ensuring that patients receive a faster diagnosis, including through genomic testing, which the Scottish Government are supporting through the implementation of the Genome UK strategy. The Scottish Strategic Network for Genomic Medicine was recently established to advise and make recommendations on genetic testing availability. It will also support the planning for future capacity in areas such as whole genome sequencing and expanding our whole exome sequencing services. Later this year, Scotland’s first ever genomics strategy will be published and backed by significant investment, with £5 million committed for 2022-23 alone.

As the hon. Member for Blaydon mentioned, newborn screening has a vital role in early diagnosis of some rare diseases and the initiation of early treatment to reduce complications. The Scottish Government are represented on the UK National Screening Committee, which makes its recommendations to all four health Departments across the UK. Through Scotland’s rare disease implementation group, those living with a rare disease will be involved in any future screening considerations, and given information so that they understand how screening impacts them and their families.

Another important commitment is the planned expansion of the Congenital Conditions and Rare Diseases Registration and Information Service for Scotland. That includes a national register that collects and holds information about babies in Scotland with a major structural or chromosomal condition or recognised syndrome. The register will be extended to collect and hold information on other rare diseases. Access to better data on rare diseases and making use of digital tools can help clinicians to make better informed decisions on care, prevent disease and allow better access to research and clinical trials. As has been mentioned, there are over 7,000 different rare diseases, so it is not possible for healthcare professionals to receive comprehensive training on every condition. It is therefore important that they are aware of rare diseases more broadly, and are more alert to considering them.

The Scottish Government are working with NHS Education for Scotland to embed more formal education about rare diseases in the training for healthcare professionals. In addition, information on rare diseases on NHS digital platforms will be improved, both for those diagnosed with a rare disease and for healthcare professionals.

Finally, the action plan sets out steps to improve the co-ordination of care, so that people living with rare diseases will have fewer wasted appointments, will benefit from the expertise that is available through multidisciplinary care, and will get care that is better tailored to their needs. That includes improving access to treatment and drugs, building on the ultra-orphan medicines pathway, which is improving access to medicines for rare and end-of-life conditions.

The Scottish Government are establishing a national care service to ensure that Scotland’s social care system consistently delivers high-quality services to benefit many people living with rare conditions. That is made possible by record funding of more than £19 billion for health and social care in the recent Scottish Budget, which represents more than £1 billion of new investment. I agree with the hon. Member for Strangford that it is imperative that we all continue to work across devolved and reserved areas to generate change for those living with rare diseases, their families and their carers. No one should be made to feel helpless or invisible because they have a rare disease.

Oral Answers to Questions

Deidre Brock Excerpts

Tuesday 1st November 2022 Commons Chamber

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I have shared my hon. Friend’s concern about this issue in the past, and I know he has taken a long-term interest in it. We must ensure that people living with dementia are prescribed anti-psychotic medication only when it is clinically appropriate., and NHS England is actively monitoring the position. I have already asked for the latest data, and I will be keeping a close eye on it.

[Deidre Brock (Edinburgh North and Leith) (SNP)]

T5. The Secretary of State says that he is boosting GP trainee numbers, but according to the Royal College of General Practitioners, 49% of the more than 40% of GP trainees who are international graduates have reported visa processing problems and 17% are considering leaving the UK altogether, taking their desperately needed skills elsewhere. Why are the UK Government hamstringing the NHS with red tape, and what is the Secretary of State doing to sort this out with ministerial colleagues?

[Steve Barclay]

Across the clinical workforce—whether we are talking about dentistry, nursing, social care or doctors—we are seeking to boost recruitment, including international recruitment, and to remove red tape. Within the GP population, however, we are looking at retention, recruitment and boosting the number of trainees.

Covid-19: Government’s Publication of Contracts

Deidre Brock Excerpts

Tuesday 9th March 2021 Commons Chamber

[Edward Argar]

I can confirm that the contract award notices for the contracts here, the PPE contracts, awarded directly by the Department are now in the public domain.

[Deidre Brock (Edinburgh North and Leith) (SNP) [V]]

Will the Minister tell us: how much was paid out under the contracts in advance of delivery; how much has actually been clawed back for services or products not delivered; and how much are the Government still to pursue in repayments?

[Edward Argar]

As part of the answer to her question, I refer the hon. Lady to the answer that I gave to the hon. Member for Strangford (Jim Shannon). In response to the rest of her question, the honest answer is that we are undertaking a stocktake and an audit. It is that which is required to assess whether any stockpiles are not fit for purpose or do not meet requirements, or to check what was and was not delivered and make sure that every order was fully fulfilled. We have been very clear that, as part of that audit, that stocktake, we will pursue with any who did not meet the requirements or did not supply the goods the recouping of that money for the public purse.

Covid-19

Deidre Brock Excerpts

Monday 2nd November 2020 Commons Chamber

[Deidre Brock (Edinburgh North and Leith) (SNP)]

We will all salute the efforts made by so many people in facing up to challenges they could never have expected a year ago. They have performed outstanding feats and endured great personal sacrifice, and the human cost will not be known or even properly guessed at for years to come. They have been let down by this incompetent Tory Government, who put dogma above pragmatism and their cronies above the people.

The Coronavirus Act 2020, written as a flu pandemic measure, was crafted in the aftermath of Exercise Cygnus some years ago, so I imagine that the options were presented to Ministers, who then chose which ones to use. There was nothing in there about taking over private healthcare facilities though, and I wonder why Ministers chose not to do so. To be clear, we are talking about not only private hospitals, but private clinics, whose staff, with clinical training, may have been very useful in the middle of a pandemic when the NHS was stretched. I am aware of allied health professionals who were unable to work because their clinics, or the clinics that employ them, were closed. These were health professionals who wanted to help out where they could but could not even volunteer for the NHS because the conditions of the business support finance or job retention finance prevented it, or were unclear whether that was allowed. Those highly trained and experienced clinicians would be unlikely to be used in a covid ward, but they could have contributed to taking some of the strain somewhere else in the NHS, instead of sitting at home.

Likewise, the means of production of any possible vaccine and protective equipment was left out of the equation. I find it hard to believe that the drafters did not offer those options, and an examination of the measures that Ministers refused must form part of the inquiry into the Government’s handling of the pandemic. Another vital part of it must be the contracts that were handed out without tendering. There is not a single half-sensible person in this Chamber who will think that the Government should have conducted full tendering for the provision of PPE and other supplies during this time, but some due diligence should be expected.

I have been asking parliamentary questions about the contracts and been told by the Department of Health and Social Care that it had no previous relationship with a load of the companies that had been contracted to supply goods and services. Take, for example, Medpro, a company that was only incorporated on 12 May, but which took a £122 million contract for supplying PPE to the Department on 25 June. That was not a bad first six weeks in business for the company, but how did the Government make sure that it could fulfil the contract? What about Clandeboye Agencies, with a £14 million contract to supply PPE gowns awarded without competition in April and one for £93 million in May? As fine a company as it might be, it is a confectionary wholesaler. Why did Ministers think it was appropriate to offer it a contract to provide PPE for frontline staff?

Santander’s website currently carries a boast that it got more than 40 businesses into the business of supplying PPE to the NHS—businesses fast-tracked on to the system on the word of a banker. We have barely scratched the surface of the contracts, but it is already clear that there was no control over the awarding of these contracts. The opportunity was there for the Government to take control of the means of supply by writing it into the Coronavirus Act 2020, but they chose not to do so. Ministers chose instead to fling billions of pounds at anyone who would promise to hand over anything approximating protective equipment. Lives may have been put at risk—the lives of healthcare workers—and that needs to be examined properly and independently of Government.

Exiting the European Union (Food and Agriculture)

Deidre Brock Excerpts

Tuesday 19th March 2019 Commons Chamber

[Deidre Brock (Edinburgh North and Leith) (SNP)]

Many myths were spoken about leaving the EU, but one of the biggest was that it was a means of cutting bureaucracy. In fact, as is becoming obvious by the mess that this place has gotten itself into, we have been lucky over the past few decades that so much red tape has been efficiently managed from Brussels. Access to collective European bodies such as the European Food Safety Authority—expert scientists who independently research and advise and ensure that food standards legislation is fit for purpose—will be sorely missed. We must co-operate with national agencies like Food Standards Scotland, which has been a driving force for public health improvements. However, here we are in the midst of a Brexit bourach. As the damaging deal remains stuck in the mud, we have a torrent of statutory instruments to process simply to get to the starting block.

Existing protections and permissions over food contact materials must continue post-Brexit. No one wants a fall in the standards for containers transporting our food or the machinery processing our food, or for packaging, kitchenware, tableware and so forth—standards that successive UK Governments have contributed towards creating. The same applies, of course, to food standards, and my hon. Friend the Member for Falkirk (John Mc Nally) will be speaking more about the draft Genetically Modified Food and Feed (Amendment etc.) (EU Exit) Regulations 2019.

It is vital that evidence-led food safety and food standards are not diminished or diluted by Brexit, which is important for our future trade with the EU as well as for public health. Any increased auditing of food safety standards and procedures at the borders will take a heavy toll on a sector that is already facing enough challenges from Brexit. Looming trade tariffs on agricultural products could close export markets and put thousands out of jobs and close hundreds of businesses. The loss of the European workforce that keeps everything flowing—pickers and packers, food processors, haulage drivers and vets—will also be a substantial blow. There is a threat to Scotland’s carefully cultivated brand identity and our protected geographical indicators. Brexit threatens all of it.

The EU accounts for 70% of annual Scottish food exports, so the possible damage is incredibly worrying, with the industry warning that a no-deal Brexit would cost £2 billion a year. The Government’s own analysis shows that the effect of crashing out of Europe on the agriculture, forestry and fishing industries would hit Scotland hardest—twice as hard as England—slashing the economy by 8%. No Government should contemplate such a self-destructive move, but the Secretary of State for Scotland sat on his hands while his Tory colleagues toyed with the no-deal catastrophe button. We cannot allow Scotland’s successful food and drinks sector to be hijacked by Brexiteers and those who enable them for party political purposes. Exports of iconic Scottish produce, such as whisky, beef, langoustines and salmon, are worth four times as much to the Scottish economy as they are to the UK’s, and seven of the top 10 food export destinations are EU countries.

We are here today to debate the replacements for legislation that we already have because of some xenophobic fear of the EU, but we still do not have cast-iron guarantees about the long-term protection of our food standards in international trade negotiations. Billions of pounds that should be spent on tackling the problems that people face the length and breadth of these islands is being wasted on Brexit bureaucracy, and countless hours of MPs’ time are being wasted replacing legislation that we already had with near-identical legislation. Kafka never came close.

Draft Food and Feed Imports (Amendment) (EU Exit) Regulations 2019 Draft Official Controls for Feed, Food and Animal Health and Welfare (Amendment Etc.) (EU Exit) Regulations 2019

Deidre Brock Excerpts

Tuesday 12th March 2019 General Committees

[Deidre Brock (Edinburgh North and Leith) (SNP)]

It is a great pleasure to serve under your chairship, Ms McDonagh. I find it hard to contain my excitement at another piece of secondary legislation necessitated by Brexit. The sheer delight of unnecessary legislation is unbounded sometimes.

Reading the explanatory notes for the regulations, we come across familiar lines—pieces of text that are familiar from other forays into this Brexit chaos. For example:

“The existing EU law is being retained in UK law after EU Exit. This instrument amends the legislation so that references to other EU Member States, the European Commission and associated elements are removed or replaced by appropriate wording.”

We are taking back control to replace with appropriate wording—a brave and decisive move. This legislation already exists, but here we are having to gather to pass it again with minor changes. That is some way to run this United Kingdom.

This legislation is very important, however. Most of the animal feed used in the UK is imported from the EU or under EU trade agreements, and any disruption to the supply will cause major problems for farmers and food production and for distribution across these islands. The same goes for fertilisers, forage seed, herbicides and pesticides. Without the EU supply lines, we are in trouble. If we do not have security of supply of these products, farmers might be growing a darned sight less than they have been used to. But it is a good fortnight until B-day, so this is not last minute or anything.

Another problem that farmers will face is that the trucks that bring these products to their farms and take away the farm’s output are more often than not driven by a non-UK EU citizen. They tend not to make £30,000 a year, so we will need a whole lot of replacements that we do not have. However, that is a headache for another day, isn’t it?

I am pleased to see that there is some indication in the regulations that the Government will respect that the devolved Administrations have different arrangements and their own positions. I hope that that is a sign of things to come, because that should be the attitude across the whole of Government and Parliament. In the middle of this epic bourach, it is one tiny glimmer of hope. Apart from anything else, it will make it easier when we come to the independence negotiations in a wee while.

I cannot say that I am entirely supportive of the statutory instruments, since they would never have been needed if there were no Brexit, but I accept that they will pass today and might be a useful part of the regulatory framework to keep the show on the road for a little while. Whether the physical manifestation of incoming supplies matches the regulatory framework, coming as they do on imaginary ferries, remains to be seen.

NHS Pay

Deidre Brock Excerpts

Wednesday 13th September 2017 Commons Chamber

[Deidre Brock (Edinburgh North and Leith) (SNP)]

The first order of business should be congratulating the Scottish Government on removing the cap on public sector pay rises. We should note, too, that, as my hon. Friend the Member for Central Ayrshire (Dr Whitford) said, Scotland’s nurses get paid more than England’s, by between £300 and £1,100 each, and that wages for nurses in Wales and in Northern Ireland are even lower than in England. It is time that the English, Welsh and Northern Irish Governments opened up the cash tin and started paying nurses more—

[Andrew Bowie (West Aberdeenshire and Kincardine) (Con)]

Will the hon. Lady give way?

[Deidre Brock]

No.

Those Governments must give nurses the cash to bridge that gap with Scottish nurses and then match the pay rises from the Scottish Government—and make it new money. This has to be new investment, not current resources and not freed-up efficiency savings—those infamous, mythical beasts. It must be new money that is put into the service to keep it viable. Squeezing current resources simply starves the whole service. Please, let us also have no more of the pretence that paying workers a decent wage would bankrupt the economy or that a couple of per cent. on the wages of the lowest-paid would be some sort of spiral of economic doom.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Will the hon. Lady join me in asking why the Welsh Labour Government have not raised the pay cap where they could in Wales? That would have cost £60 million and would have relieved the situation for 30,000 nurses.

[Deidre Brock]

I thank the hon. lady for that important intervention. Austerity, wage cuts and in-work poverty are political choices—this is policy not necessity. The poverty facing public sector workers, including NHS workers, is a choice made by the Government—a choice made by millionaires, making ordinary workers poorer. An “increase” of 1% in someone’s wage while Brexit takes food prices through the roof, heating bills rocket, public transport fares are up by a quarter—more in some cases—the costs of childcare grow faster than the children, and rents soar is simply a pay cut. That makes the effects of the Government’s inhumane austerity policy worse. These workers are suffering the effects of cuts to public services.

In the Tory’s June manifesto, the Prime Minister wrote that she would deliver a

“Britain in which work pays”

and a mental health Bill

“to put parity of esteem at the heart of treatment”.

Last year, the Mental Health Foundation found a causal link between poverty and poor mental health, just like dozens of studies have shown before. That means that Tory Government austerity is increasing the incidence of mental health problems while promising to make it better. That increases the pressure on the NHS and betrays the patients who need the help. We cannot solve the problem in England’s NHS with new laws; it needs new cash. A responsible Government would be finding that new cash and funnelling it into the NHS and other public services.

English police forces have been saying that they cannot afford pay rises without additional funding. Some forces have clearly already reached and exceeded capacity, judging by the stories of crimes being ignored because no officers are available. For some unfathomable reason, the Government have let police numbers drop by around 20,000 since 2010. That is not a public service in a serviceable condition; that is a public sector breaking down.

If austerity continues, England’s public sector will cannibalise itself, and when that happens, Scotland’s public services will be damaged as well. Tied to this place, Scotland gets damaged time and again, but public services in England have reached fracture-point and are disintegrating. At this point, England’s NHS is not struggling but dying, and it is being helped on its merry way by Ministers who would rather it was gone. Breaking down the fabric of public services renders them irreparable, and breaking down the workers who deliver them does the same. Decent pay for decent work is not an outrageous demand, and decent funding for society’s infrastructure is a matter of respecting one’s own self-interest as well.