Axial Spondyloarthritis
Munira Wilson Excerpts(4 years, 2 months ago)
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Tom Randall (Gedling) (Con)
I am grateful for the opportunity to hold this Adjournment debate. I have been a Member of this House for nine months. One of the great privileges of being a Member of Parliament is the opportunity to sit in this Chamber. The more astute observers might have noticed that I occasionally sit slightly awkwardly on these Benches. I admit that, sometimes, I slouch. One of my waggish Twitter correspondents recently juxtaposed a photograph of me and a photograph of my right hon. Friend the Leader of the House reclining on the Treasury Bench, with the caption,
“great to see Gedling MP getting comfy in parliament and following in the footsteps of his fellow parliamentarian”.
I admire the Leader of the House very much—there is much to admire about him—but on this, alas, I do not seek to emulate him. Rather, my awkward posture arises from the condition I have: ankylosing spondylitis.
Ankylosing spondylitis is one of three sub-types of a type of inflammatory arthritis called axial spondyloarthritis. Axial spondyloarthritis is a chronic inflammation of the spine and joints. It is a painful and progressive long-term condition for which there is no cure. It is unlike conditions such as osteoarthritis, which is often associated with older people and the wear and tear that comes with ageing.
Axial spondyloarthritis, often abbreviated to axial SpA or AS, tends to present in the late teens or early 20s, with the average onset being just 24. In my own case, I first presented with symptoms at 16. As well as the stiffness and pain that one might expect from an arthritic condition, axial SpA is also associated with a range of complications and comorbidities, including uveitis and psoriasis. But it is perhaps the less visible complications of AS that can be the most debilitating. Many suffer from severe fatigue, as well as flare-ups and stiffness.
The condition presents itself in a period when most people are at a crucial stage of their lives, looking to build careers, start families and forge social relationships. I well remember my early 20s, when I was starting out in my first job after university, before I was prescribed the treatments that I am on now. When I got home after doing an eight-hour day in the office—something that most people would take in their stride—I crashed out on the bed, completely exhausted from a normal day at work.
Munira Wilson (Twickenham) (LD)
I congratulate the hon. Member on securing this important debate. My husband also suffers from ankylosing spondylitis. Like the hon. Member, he started getting symptoms when he was about 20, and it took him about 10 years to get diagnosed. He was exhausted and struggling to work, and there were days when I had to help him put his socks on because he could not bend over. Does the hon. Member agree that the shocking delays in getting a diagnosis have a massive impact on quality of life, as do the difficulties that people have in accessing the right treatment? We need to improve awareness, particularly of the National Institute for Health and Care Excellence guidelines on the treatments available.
The Minister for Care (Helen Whately)
I congratulate my hon. Friend the Member for Gedling (Tom Randall) on securing this debate and on bringing the House’s attention to the need for earlier diagnosis of axial spondyloarthritis. May I say how important it is that he has brought his personal experience to the debate? The House should appreciate the courage he has shown to speak up about his own condition—something that cannot be easy, but that is an example. I feel strongly that all of us bring our own experiences to our work. That is one of the reasons it is important to have a diverse House of Commons. He has brought his own extremely painful experience to bear. I am confident that simply by doing so, he will make a difference for many others who suffer from this painful condition or who may do so in the future.
My hon. Friend rightly highlighted how critical it is for those with axial spondyloarthritis to get the right diagnosis and get it quickly, and to have their symptoms taken seriously by all healthcare professionals. It is clearly incredibly important to ensure that people can access the right sort of care at the right time, as it can prevent the potentially devastating impact of the condition on quality of life. I very much appreciate from his account and from others I have read how the condition affects people and their loved ones. We must do all we can to reduce the impact on people’s physical and mental health, and I want to do so.
As my hon. Friend said, axial spondyloarthritis, which may also be referred to as axial SpA or AS, is a form of inflammatory arthritis that most commonly affects the spine. It is a painful long-term condition that currently has no cure. As well as affecting the joints in the spine, it can affect the chest, the pelvis and other joints, ligaments and tendons. Unfortunately, AS is often misdiagnosed as mechanical lower back pain or diagnosed late, leading to delays in access to effective treatments. It is estimated that approximately 220,000 people, or one in 200 of the adult population in the UK, have the condition.
As my hon. Friend said, the average age of onset is relatively young at 24, with patients having to wait on average eight and a half years before diagnosis at an average age of 32. That is clearly far too long to be waiting for a diagnosis, because left untreated the condition can lead to irreversible spinal fusion, causing severe disability. That makes a rapid referral to specialist care for those with any signs or symptoms crucial to treatment and to preventing those kinds of outcomes.
I recognise that AS can have a devastating effect on the quality of life of people who sadly go undiagnosed or misdiagnosed for far too long. This must get better. It is clear to me that early diagnosis and treatment are the key to preventing the development of other serious conditions further down the line and to improving the quality of life of those who suffer from this condition.
We recognise that one major reason for the delays in diagnosing axial SpA is a lack of awareness of the condition among healthcare professionals and the general public. That can take many forms: a lack of awareness of different types of arthritis; a lack of knowledge about the differences between inflammatory and mechanical back pain; or misunderstanding that AS affects similar numbers of men and women. Educational interventions to improve the level of awareness should lead to improvements in earlier diagnosis, and a range of materials are being produced to this effect. For example, an online training module on AS for GPs has been produced by the Royal College of General Practitioners.
In June this year, the National Institute for Health and Clinical Excellence published its managing spondyloarthritis in adults pathway, which has been well received by patient groups and charities. This set out recommendations for healthcare professionals in diagnosing and managing axial SpA in adults. It describes how to improve the quality of care being provided or commissioned in this area, both through guidance and via an associated quality standard. I completely agree that we would expect providers and commissioners to be following the guidance and recommendations in this area so that we can improve the overall rate of earlier diagnosis. It is not only important that we have this guidance but that it will be within the pathway that the APPG and my hon. Friend have argued should be put into place in practice.
Munira Wilson
While I welcome the guidance and the pathway, what does the Minister suggest can be done to tackle the clinical conservatism that we quite often find among specialists even once the diagnosis is made? In my husband’s case, the rheumatologists said to him, “You are far too young for us to move you on to the more advanced treatments”, so he was living with huge amounts of pain on just very mild painkillers and steroids. It was only because we happen to live in London that we got him re-referred to a world-leading specialist in the field who then put him on anti-TNFs. He is now able to be the primary carer of our two very young, active children, which he could not do otherwise. Not everybody has that luxury, especially if they live in a rural area.
Helen Whately
The hon. Member makes a really important point, again drawing from her own personal and family experience, about the importance of awareness of what is the best treatment for this condition. If she would like me to do so, I am happy to take away her specific point and look into how we can address the need for improvement in the treatment, as well as her general point about needing a better pathway. I am also happy to meet my hon. Friend the Member for Gedling, as he requested, to talk further about how we can make more progress on the right treatment for this condition, and awareness of it.
Coming back to the overall points about what we can do to improve the treatment, the NHS long-term plan set out our plans to improve healthcare for people with long-term conditions, including axial SpA. That includes making sure that everybody should have direct access to a musculoskeletal first-contact practitioner, expanding the number of physiotherapists working in primary care networks, and improving diagnosis by enabling people to access these services without first needing a GP referral—in fact, going directly to speak to somebody with particular expertise in the area of musculoskeletal conditions. The hon. Member for York Central (Rachael Maskell) intervened to make a point about the demands on physiotherapists. I have asked to be kept updated on progress on delivering the expansion of the number of physiotherapists in primary care networks and, more broadly, on the implementation of the NHS long-term plan. We do indeed need to make sure that we have sufficient physiotherapists to be able to deliver on that. I anticipate that that should have a positive impact on the problem of delayed diagnosis for a range of conditions, and particularly for this specific condition.
While better education and awareness of AS should improve the situation, there is clearly more that we can and must do to understand the condition. The National Institute for Health Research is funding a wide range of studies on musculoskeletal conditions, including AS specifically. That research covers both earlier diagnosis and treatment options for the condition, so that we continue to build our understanding of good practice and improve both the treatment and the outcomes for those who have the condition.
In conclusion, I want to pick up on my hon. Friend’s point about the importance of awareness and the call for an awareness campaign by the APPG, and I should of course commend the National Axial Spondyloarthritis Society for its work in this area. My hon. Friend mentioned that there is clearly a huge amount of public health messaging going out at the moment, but I hope the time will come when we can gain more airtime for this particular condition. However, the fact that we are having this conversation in the Chamber is in itself a step towards raising awareness of the condition, and so, too, is all the work that is going on; that is important as well, because along with having the policy and the pathway, we must make sure it is put into practice.
I congratulate my hon. Friend again on bringing this subject to the attention of the House and on the work he is doing and the effect that this will have. I truly want to support him and to do our best for all who suffer from this condition and may suffer from it in future, to ensure that we achieve much earlier diagnosis and treatment and better outcomes for those with the condition.
Coronavirus
Munira Wilson Excerpts(4 years, 2 months ago)
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Matt Hancock
Of course, I do worry first and foremost about the health of the nation, and we need a rule that is super-simple. Children do transmit this virus, and we have made the decision to keep the rule as simple as possible considering all those risks. I understand where my hon. Friend is coming from. We take a different approach in different areas according to the extent of cases locally, and that is an important tool in our armoury.
Munira Wilson (Twickenham) (LD)
Like many other Members, I have been inundated with emails from doctors, teachers and parents unable to access the tests that they desperately need. Several of them have been advised that if they put an Aberdeen postcode into the system, they can get a test in Twickenham—and they have succeeded. How on earth is a world-beating test and trace system functioning like this, and what is the Secretary of State doing to fix it? In the meantime, does he recommend that I tell constituents who desperately need a test to game the system in that way?
Matt Hancock
No; in fact, it is incumbent on us all to take a responsible approach and tell our constituents that tests are available in large numbers, that the average distance travelled is 5.8 miles and that people should take this seriously and not game the system.
Covid-19 Update
Munira Wilson Excerpts(4 years, 2 months ago)
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Matt Hancock
Yes, I absolutely agree, and I also agree with my hon. Friend’s description of the situation, which is that we have built this system at great pace. I did not know about the example in Telford, although I had heard that many people had been directed there in this instance. In fact, only on Tuesday evening, after being in the House, I had a meeting about the problem of people being directed to travel too far. We are absolutely looking at the broader problem, and I will take away that particular example and find out exactly what glitch caused it.
Munira Wilson (Twickenham) (LD)
I note from the statement that organised sport is exempt from the new regulations. We all want life to return to normal, including sport, which is an important sector of our economy, but, as things stand, next month 20,000 spectators are scheduled to travel to Twickenham. Can the Secretary of State help me to understand the logic whereby the scientific advice suggests that a family of six cannot meet a relative in their garden, yet the Prime Minister is saying that the guidance on sporting events, which means thousands of spectators will be travelling around the country to stadiums, drinking and socialising, is still only under review?
Matt Hancock
The hon. Lady has answered her own question, because the Prime Minister did announce that that programme is under review, and the results of that will be announced shortly.
Covid-19 Update
Munira Wilson Excerpts(4 years, 2 months ago)
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Matt Hancock
Yes, absolutely. My hon. Friend makes an incredibly important point with which I agree wholeheartedly. The backlog that was caused by the inevitable and, as he put it, unavoidable delays to treatment in the peak has more or less halved, which is good news. So there is progress. We have changed the NHS to be split, essentially, between sites that are covid-secure and sites where there may be covid. That will help us to protect cancer treatment, as we go forward, exactly as my hon. Friend asks.
Munira Wilson (Twickenham) (LD)
On 16 July, I flagged with the Secretary of State that the Academy of Medical Sciences was warning that we needed a rapid expansion of test and trace to be prepared for a second wave. He told me they were learning lessons as we go. Today, pupils and parents in my constituency are being sent as far afield as Aberdeen and Newquay for tests. They cannot get home tests. Children are back at school. Forget world-beating—what is he doing to ensure that we have a functioning test-and-trace system in place right now?
Oral Answers to Questions
Munira Wilson Excerpts(4 years, 2 months ago)
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Matt Hancock
Yes, I will. I agree wholeheartedly with my hon. Friend that so-called conversion therapy is abhorrent. I praise her for the campaign she is running on this. I agree with the Prime Minister who, from this Dispatch Box, committed to ensuring that that practice is stamped out. We have a review under way. I will make sure that I work very closely with my hon. Friend, who has done so much to make the case.
Munira Wilson (Twickenham) (LD)
Matt Hancock
Yes, we have been rolling out the asymptomatic testing for residents and staff in care homes. As the hon. Member will know from the statement I gave to the House in July, we had a problem with the supply of tests from one particular company, which caused some difficulties. We have spent the summer catching up on that programme.
Covid-19
Munira Wilson Excerpts(4 years, 2 months ago)
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Matt Hancock
Yes. Both my colleagues from Milton Keynes have been assiduous in making the case for the need for expansion at Milton Keynes Hospital. The team there have been absolutely brilliant, even while the chief executive has also been stepping up to national responsibilities in response to this crisis. I hope that the expansion of A&E will help to ensure that my hon. Friend’s constituents can access emergency services when they need them.
Munira Wilson (Twickenham) (LD)
Given that the Secretary of State decided to announce the scrapping of Public Health England in the middle of recess, when there was no opportunity for parliamentary scrutiny, I find it astonishing that his statement did not make a single reference to the bureaucratic reorganisation in the middle of a pandemic. The King’s Fund described scrapping PHE without a full public inquiry as finding it “guilty without a trial”. The Prime Minister has committed to an inquiry. Will the Secretary of State now set out when that inquiry will happen?
Matt Hancock
This is all about ensuring that we are as well prepared as possible for tackling this virus and that the total focus of the new National Institute for Health Protection is on the prevention of infectious diseases. I have set that out very clearly, as I did in my speech. Sometimes we have to make changes to ensure that our systems are working as effectively as possible, and, critically, we had to do so to bring together the different parts of the infection response that had ended up in different places and needed to be brought under single leadership.
Coronavirus Response
Munira Wilson Excerpts(4 years, 4 months ago)
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Munira Wilson (Twickenham) (LD)
The £3 billion for the NHS is, of course, welcome, and the Secretary of State has rightly spoken passionately about protecting the NHS, but may I respectfully remind him that he is the Secretary of State for Health and Social Care? I have real concerns about social care being overwhelmed if there is a second surge, with hospitals having to discharge people into the community quickly, as we have seen with the first wave. What further package of support will he announce for social care?
Matt Hancock
Of course it is important to support social care as well, as we have financially right from the start. The vast majority of discharges from hospital were into the community, with care packages. Social care is a very important part of this issue. We announced the money for the NHS last week, but we continue to look at what we can do to support social care too.
Covid-19 Update
Munira Wilson Excerpts(4 years, 4 months ago)
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Matt Hancock
Yes, of course. We do not ever want to have to bring in local lockdowns, but they are an important tool in our armoury to tackle outbreaks where we find them. I much prefer local action to be on individual specific premises or surgeries in a more targeted way.
I also pay tribute to Blackburn with Darwen Borough Council, which has done a good job of bringing in local measures when it saw its numbers going up, before the numbers were anywhere near to where Leicester got to. It has done a terrific job. It is vital that we have that local action and that we do not resile from taking it. Having said that, we also recognise the impact that it has, of course, on the people and businesses involved.
Munira Wilson (Twickenham) (LD)
Today Sir Patrick Vallance told the Science and Technology Committee:
“It is clear that the outcome has not been good in the UK; I think we can be absolutely clear about that.”
Although I am delighted that the Prime Minister committed to my right hon. Friend the Member for Kingston and Surbiton (Sir Edward Davey) yesterday that we will have an independent inquiry, we need to learn lessons urgently now ahead of a second wave, not least following the warnings in the Academy of Medical Sciences report earlier this week that suggested that we need to rapidly improve test and trace capacity and our PPE resilience. Will the Secretary of State tell the House what he is doing to make sure that we learn from our mistakes?
Matt Hancock
We are learning all the way through about how best to respond to this virus. In fact, changing measures, such as the changes we have made in Leicester today, is a good example of learning from the progress of the virus and learning about how best to tackle it. That is just one of myriad ways in which we are learning and improving all the time.
Coronavirus Update
Munira Wilson Excerpts(4 years, 4 months ago)
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Matt Hancock
Yes. Local action can be anything from action in an individual business premises, an individual farm, as we saw in Herefordshire over the weekend, or an individual GP surgery, up to a group of organisations or, if necessary, a whole city. The approach we take is that, for an individual premises, that is largely a decision for the local director of public health to take, but of course, once we get up to the level of a whole city, that has to be a decision taken nationally by the Government. We will publish more details of this escalation procedure in due course.
Munira Wilson (Twickenham) (LD)
A report from the Academy of Medical Sciences states today that July and August are critical months for “intense preparations” for a possible second surge. What specific measures is the Health Secretary taking to stress-test the PPE supply chain during that period, as the report recommends, given that recent improvements to supply have not taken place in worst-case scenario conditions? Furthermore, will he be responding to calls from Care England and the Relatives & Residents Association to provide PPE to adult social care, free of charge, as an important public health intervention ahead of a second wave?
Matt Hancock
Of course we are doing that work to stress-test the delivery of PPE and to rebuild the stockpile. We had a huge stockpile at the start, but the distribution of that stockpile was extremely difficult for a couple of weeks while we fully sorted it out, got the supplies flowing back in from abroad and built up domestic supplies. Lord, Paul, Deighton has done a remarkable job in putting together the logistical effort. It is exactly as the hon. Lady says. Over the summer, we are doing the work to ensure we are ready for winter.
Points of Order
Munira Wilson Excerpts(4 years, 4 months ago)
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Munira Wilson (Twickenham) (LD)
On a point of order, Mr Deputy Speaker. As we are heading into another recess, with the ongoing pandemic and a potential second wave, as we have heard today, on the way, do you have any suggestions or provisions for how hon. Members can scrutinise effectively during that period what the Department is doing, given the challenges we have, which the Secretary of State has already alluded to, in terms of responding in a timely fashion to correspondence?
Mr Deputy Speaker (Mr Nigel Evans)
I am grateful to the hon. Member for her point of order and for giving me notice of it. While it is not for the Speaker or me to advise individual hon. Members or Select Committees how they may wish to carry out their work during recess, we may be able to help by emphasising again what the Speaker has said about the importance of correspondence from hon. Members receiving prompt replies. I agree that this will be of particular importance during the recess, while the country is still facing a major public health challenge. I hope that Ministers will give careful consideration to how they can support all hon. Members carrying out their duties during this recess by providing prompt and helpful replies to correspondence.