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My constituent Harley Harris is 15. He has spondylocarpotarsal synostosis syndrome, which has caused his spine to curve 120° and damaged his lungs, leaving him with significantly reduced lung function and in continual pain. Harley needs lifesaving surgery, but his family have been unable to get a referral to have it performed in the UK. Will the Minister commit to urgently reviewing Harley’s case to ascertain what support can be provided to him and his family?
My constituent Harley Harris is 15. He has spondylocarpotarsal synostosis syndrome, which has caused his spine to curve 120° and damaged his lungs, leaving him with significantly reduced lung function and in continual pain. Harley needs lifesaving surgery, but his family have been unable to get a referral to have it performed in the UK. Will the Minister commit to urgently reviewing Harley’s case to ascertain what support can be provided to him and his family?
I am very sorry to hear about Harley’s condition, and my thoughts are with him and his family. I am sure my hon. Friend understands that neither the Department nor NHS England can comment on the clinical appropriateness of suggested treatments for an individual. I understand that Harley and his family have already been in touch with the Department, and would suggest that my hon. Friend continues to raise this case with NHS England. We are committed to improving the lives of those living with rare diseases, including Harley’s condition of SCTS.
I am very sorry to hear about Harley’s condition, and my thoughts are with him and his family. I am sure my hon. Friend understands that neither the Department nor NHS England can comment on the clinical appropriateness of suggested treatments for an individual. I understand that Harley and his family have already been in touch with the Department, and would suggest that my hon. Friend continues to raise this case with NHS England. We are committed to improving the lives of those living with rare diseases, including Harley’s condition of SCTS.
I am very sorry to hear about Harley’s condition, and my thoughts are with him and his family. I am sure my hon. Friend understands that neither the Department nor NHS England can comment on the clinical appropriateness of suggested treatments for an individual. I understand that Harley and his family have already been in touch with the Department, and would suggest that my hon. Friend continues to raise this case with NHS England. We are committed to improving the lives of those living with rare diseases, including Harley’s condition of SCTS.
My constituent Harley Harris is 15. He has spondylocarpotarsal synostosis syndrome, which has caused his spine to curve 120° and damaged his lungs, leaving him with significantly reduced lung function and in continual pain. Harley needs lifesaving surgery, but his family have been unable to get a referral to have it performed in the UK. Will the Minister commit to urgently reviewing Harley’s case to ascertain what support can be provided to him and his family?
To ask the Secretary of State for Health and Social Care, what steps he is planning to take to improve the delivery of joined-up care for people affected by (a) axial spondyloarthritis and (b) other musculoskeletal health conditions following the abolition of NHS England.
To ask the Secretary of State for Health and Social Care, what steps he is planning to take to improve the delivery of joined-up care for people affected by (a) axial spondyloarthritis and (b) other musculoskeletal health conditions following the abolition of NHS England.
As we bring together the Department of Health and Social Care and NHS England to form a new joint centre, we will empower staff to focus on delivering better care for patients, including for people with axial spondyloarthritis and other musculoskeletal (MSK) conditions, driving productivity up, and getting waiting times down. By the end of the process, we estimate that these changes will save hundreds of millions of pounds a year, which will be reinvested in frontline services.
We continue to take forward the Government’s ambitious reform agenda as set out in the health mission, with more details to come when the 10-Year Health Plan is published. The 10-Year Health Plan will deliver the three big shifts the National Health Service needs to be fit for the future: from hospital to community; from analogue to digital; and from sickness to prevention. All of these are relevant to improving MSK care for people in all parts of the country. More tests and scans delivered in the community, better joint working between services, and greater use of apps and wearable technology will all support people to manage their long-term conditions, including MSK conditions, closer to home.
To ask the Secretary of State for Health and Social Care, what steps he is taking to help support people with axial spondyloarthritis to (a) remain in employment or (b) return to the workforce.
To ask the Secretary of State for Health and Social Care, what steps he is taking to help support people with axial spondyloarthritis to (a) remain in employment or (b) return to the workforce.
The Government and NHS England recognise the significant burden of disease associated with axial spondyloarthritis, particularly where diagnosis is delayed. We recognise the work of the National Axial Spondyloarthritis Society in promoting early diagnosis and good access to effective treatment. Time from referral to diagnosis is included in the National Early Inflammatory Arthritis Audit which covers National Health Service rheumatology services in England and Wales, and we have prioritised reducing waiting times for services through the Elective Recovery Programme and the Getting It Right First Time MSK Community Delivery Programme.
We also have a range of specialist initiatives to support individuals to stay in work and get back into work. Measures include support from Work Coaches and Disability Employment Advisers in Jobcentres and Access to Work grants, joining up health and employment support around the individual through programmes like WorkWell, as well as the mobilisation of eight place-based trailblazers to reduce economic inactivity.
That this House celebrates the achievement of Bedfordshire Rheumatology team who have been recognized as one of three trusts nationally who have actively reduced the diagnostic delay in Axial Spondyloarthritis (Axial SpA); understands the impact of Axial SpA as an inflammatory condition of the spine and joints, which works silently, leaving people in increasing pain and exhaustion; and supports the aims of the Act on Axial SpA campaign to reduce the current UK average time between first symptom to diagnosis from eight and a half years to one year.
That this House celebrates the achievement of Bedfordshire Rheumatology team who have been recognized as one of three trusts nationally who have actively reduced the diagnostic delay in Axial Spondyloarthritis (Axial SpA); understands the impact of Axial SpA as an inflammatory condition of the spine and joints, which works silently,...
To ask the Secretary of State for Health and Social Care, whether she plans to incorporate training on axial spondyloarthritis as a core component of continuous professional development within primary care.
To ask the Secretary of State for Health and Social Care, whether she plans to incorporate training on axial spondyloarthritis as a core component of continuous professional development within primary care.
The Getting It Right First Time Rheumatology Programme is working to improve the early diagnosis of people with conditions such as axial spondyloarthritis. The programme published a national report on rheumatology in 2021, which makes a series of recommendations to support equitable and consistent access to diagnostic tests.
The programme has also worked with the National Axial Spondyloarthritis Society to develop a pathway for axial spondyloarthritis to support clinicians to provide the best patient care and allow patients and commissioners to see what they can expect from a service.
Additionally, the National Institute for Health and Care Excellence (NICE) has produced a range of guidance to support early diagnosis of conditions such as axial spondyloarthritis. Its Quality Standard on spondyloarthritis [QS170] sets out that adults with suspected axial or peripheral spondyloarthritis should be referred to a rheumatologist. Quality Standards are important in setting out to patients, the public, commissioners, and providers what a high-quality service should look like in a particular area of care. Whilst providers and commissioners must have regard to NICE Quality Standards in planning and delivering services, they do not provide a comprehensive service specification and are not mandatory.
General practitioners are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE, to ensure that they can continue to provide high quality care to all patients.
To ask the Secretary of State for Health and Social Care, whether her Department is taking steps to reduce waiting times for axial spondyloarthritis diagnosis.
To ask the Secretary of State for Health and Social Care, whether her Department is taking steps to reduce waiting times for axial spondyloarthritis diagnosis.
The Getting It Right First Time Rheumatology Programme is working to improve the early diagnosis of people with conditions such as axial spondyloarthritis. The programme published a national report on rheumatology in 2021, which makes a series of recommendations to support equitable and consistent access to diagnostic tests.
The programme has also worked with the National Axial Spondyloarthritis Society to develop a pathway for axial spondyloarthritis to support clinicians to provide the best patient care and allow patients and commissioners to see what they can expect from a service.
Additionally, the National Institute for Health and Care Excellence (NICE) has produced a range of guidance to support early diagnosis of conditions such as axial spondyloarthritis. Its Quality Standard on spondyloarthritis [QS170] sets out that adults with suspected axial or peripheral spondyloarthritis should be referred to a rheumatologist. Quality Standards are important in setting out to patients, the public, commissioners, and providers what a high-quality service should look like in a particular area of care. Whilst providers and commissioners must have regard to NICE Quality Standards in planning and delivering services, they do not provide a comprehensive service specification and are not mandatory.
General practitioners are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE, to ensure that they can continue to provide high quality care to all patients.
To ask the Secretary of State for Health and Social Care, whether he is taking steps through the forthcoming Major Conditions Strategy to help improve the diagnosis and management of axial spondyloarthritis.
To ask the Secretary of State for Health and Social Care, whether he is taking steps through the forthcoming Major Conditions Strategy to help improve the diagnosis and management of axial spondyloarthritis.
On 24 January 2023, we announced our plan to publish the Major Conditions Strategy. This strategy will explore how we can tackle the key drivers of ill-health in England, reduce pressure on the National Health Service and reduce ill-health-related labour market inactivity.
The Strategy will focus on six major groups of conditions, including musculoskeletal (MSK) disorders. MSK conditions affect people across the life course and cover a range of conditions, including inflammatory conditions such as axial spondyloarthritis.
We have now published our initial report ‘Major Conditions Strategy: Case for change and our strategic framework’. It sets out what we have learned so far, and shares what we plan to focus on next to develop the final strategy.
For MSK conditions, it sets out that we will look to: improve secondary prevention and the use of non-pharmaceutical interventions, embedding a biopsychosocial and personalised approach and building upon the progress made through the NHS Long Term Plan; advocate the use of population health management methodologies to target the right kind of support based on individual circumstances and need to those who need it most; and aim to improve services where medical treatment is necessary.
Following publication of the strategic framework, we will continue to develop the strategy, informed by the Call for Evidence and ongoing engagement with stakeholders.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to reduce the diagnosis time for people with Axial Spondyloarthritis (a) in the Congleton constituency and (b) nationally.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to reduce the diagnosis time for people with Axial Spondyloarthritis (a) in the Congleton constituency and (b) nationally.
NHS England’s Getting It Right First Time programme has worked with the National Axial Spondyloarthritis Society to create a pathway to support clinicians to improve the diagnosis of Axial Spondyloarthritis, including in Congleton. The pathway is available at the following link:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the effectiveness of NICE Quality Standard 170 on spondyloarthritis in reducing delays in diagnosis for people with axial spondyloarthritis.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the effectiveness of NICE Quality Standard 170 on spondyloarthritis in reducing delays in diagnosis for people with axial spondyloarthritis.
We have made no such assessment. Quality standards issued by the National Institute for Health and Care Excellence are based on a thorough assessment of the available evidence and represent best practice for the health and care system. National Health Service organisations and healthcare professionals should take them fully into account in ensuring that services meet the needs of patients.
To ask the Secretary of State for Health and Social Care, what steps he is taking to implement NICE Quality Standard 170 on spondyloarthritis.
To ask the Secretary of State for Health and Social Care, what steps he is taking to implement NICE Quality Standard 170 on spondyloarthritis.
The National Institute for Health and Care Excellence (NICE) promotes quality standards and other guidance via its website, newsletters and other media. Whilst providers and commissioners must have regard to NICE quality standards in planning and delivering services, they do not provide a comprehensive service specification and are not mandatory.
To ask Her Majesty's Government what assessment they have made of the effectiveness of the guidance included in the guideline by the National Institute for Health and Care Excellence Spondyloarthritis in over 16s: diagnosis and management, published on 28 February 2017.
To ask Her Majesty's Government what assessment they have made of the effectiveness of the guidance included in the guideline by the National Institute for Health and Care Excellence Spondyloarthritis in over 16s: diagnosis and management, published on 28 February 2017.
No specific assessment has been made.
The National Institute for Health and Care Excellence’s guidelines describe best practice but are not mandatory, although health and care commissioners are expected to take them fully into account.
To ask Her Majesty's Government what steps they are taking to implement the guideline by the National Institute for Health and Care Excellence Spondyloarthritis in over 16s: diagnosis and management, published on 28 February 2017.
To ask Her Majesty's Government what steps they are taking to implement the guideline by the National Institute for Health and Care Excellence Spondyloarthritis in over 16s: diagnosis and management, published on 28 February 2017.
No specific assessment has been made.
The National Institute for Health and Care Excellence’s guidelines describe best practice but are not mandatory, although health and care commissioners are expected to take them fully into account.
Agreed to on question.
Agreed to on question.
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...
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...
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...
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...
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...
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...
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...
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...
The hon. Lady is absolutely right. What I and her husband have experienced is sadly not a rare phenomenon.
The name axial spondyloarthritis will be unknown to many, if not most, people, but it is not uncommon. It affects about one in 200 of the adult population in the UK, or...
The hon. Lady is absolutely right. What I and her husband have experienced is sadly not a rare phenomenon.
The name axial spondyloarthritis will be unknown to many, if not most, people, but it is not uncommon. It affects about one in 200 of the adult population in the UK, or...
I congratulate the hon. Gentleman on bringing forward this debate. I spoke to him this morning to seek his permission to intervene. He is aware of the massive eight-and-a-half-year delay in diagnosing this awful illness. I read an article in my newspaper back home in May about a young mum...
I congratulate the hon. Gentleman on bringing forward this debate. I spoke to him this morning to seek his permission to intervene. He is aware of the massive eight-and-a-half-year delay in diagnosing this awful illness. I read an article in my newspaper back home in May about a young mum...