Hypermobility Syndromes: Healthwatch Calderdale’s Report

Jo Churchill Excerpts

Monday 7th October 2019 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Jo Churchill)]

I congratulate my hon. Friend the Member for Calder Valley (Craig Whittaker) on securing this debate on such an important issue, and for taking the first step to bring the broader element of education and communication to the Chamber tonight by outlining the report from Healthwatch Calderdale on hypermobility syndromes. I join him in commending the work of local Healthwatches in championing the patient voice and in doing all that they do.

My hon. Friend has rightly highlighted how critical it is for those living with hypermobility syndromes to be able to obtain the right diagnosis and sometimes how challenging that is, because of the nature of all the different elements of the syndrome involved. This is also about people having their symptoms taken seriously by healthcare professionals. As he and the hon. Members for Strangford (Jim Shannon) and for Halifax (Holly Lynch) outlined, sometimes just being taken seriously is the first step on the path to accessing the relevant treatment that they need. Those professionals need to be aware of the spectrum of the condition. All those things are incredibly important so that patients can access the right care at the right time. For example, someone may access physiotherapy if they feel particularly unwell, but if they then feel like they have to go back down the snake, it can often seem like more of a fight, as the hon. Member for Strangford alluded to, so making sure that pathways are streamlined is exceedingly important.

As my hon. Friend the Member for Calder Valley will be aware, the NHS England specialised commissioning team in Yorkshire and the Humber responded to the report only last month. I gather that the specialised commissioning team and the clinical commissioning group continue to engage with Healthwatch Calderdale on the report’s findings. Ensuring that that engagement is beneficial and delivers what patients want, and that it is as broad as possible, is important. I urge both him and the hon. Member for Halifax to make sure that they are engaged with the process and with holding the CCG and Healthwatch Calderdale to account in understanding whether objectives are being met and a better service is being delivered.

We have heard from my hon. Friend that hypermobility syndromes can have devastating effects on quality of life but often go undiagnosed or misdiagnosed for many years, which also adds to the stress. This situation must improve. As he pointed out, good communication and information sharing could make a big difference to how an individual feels their journey is progressing, and I assure him that we are committed to improving the diagnosis of rare diseases and to assisting patients so that their diagnosis feels less like a fight, as the hon. Member for Strangford put it.

[Craig Whittaker]

One of the key problems is that the hypermobility syndromes are treated by NHS England as rare diseases. As we have heard, Healthwatch Calderdale has 11 complaints on the books, but if we times that across Yorkshire and the Humber, it means there are several hundred complaints, and that is only people who have complained, not people who have been diagnosed. My challenge back to the Minister is this: we keep calling it a rare disease, but is it really a rare disease?

[Jo Churchill]

The challenge with rare diseases is that they are collectively common but rare in and among themselves. As my hon. Friend articulated, there are many different elements to this syndrome that may be diagnosed as Ehlers-Danlos or a plethora of other things. That makes treating them more of a challenge and is why there has to be communication and information sharing to make it a proper pathway for an individual. Although for each life it is really challenging, 11 is not a large patient cohort. That is one of the challenges when dealing with diseases and syndromes such as Ehlers-Danlos and hypermobility syndromes more broadly.

Improving the diagnosis using cutting-edge technology is key. The genomic medicine service, which was announced last October, aims to provide consistent and equitable access to the most up-to-date genomic testing in England, which may help, and I am pleased that hypermobility syndromes are included in the national genomic test directory, which underpins this service. That may provide more of the cohesion that my hon. Friend is looking for.

As my hon. Friend points out, improving awareness of hypermobility syndromes among healthcare professionals, particularly general practitioners, is key. It is critical to ensuring better diagnosis and treatment of these conditions and is vital if we are to build trust and confidence in the system and actually help those with rare diseases. As I say, they are collectively common—3.5 million people across the UK are affected—but there is a significant gap in our understanding of their diagnosis because of the number of different ways they can present.

On raising awareness, there is always more that can be done, and we must learn from areas of good practice. For example, Ehlers-Danlos Support UK has developed a toolkit in collaboration with the Royal College of General Practitioners. I am pleased to hear that my hon. Friend’s clinical commissioning group, NHS Calderdale, has issued the links to the EDS toolkit to its GP member practices and encouraged clinicians to consider adding this topic to their learning needs, because building awareness is very much part of the answer.

Recently, a clinical update on Ehlers-Danlos syndromes was published in The BMJ. That is another excellent example of how the clinical community is working to improve knowledge and awareness and help provide positive NHS care for patients by transferring that knowledge into better diagnosis.

NHS England commissions specialised diagnostic services for hypermobility syndromes, including Ehlers-Danlos syndrome, osteogenesis imperfecta and Stickler syndrome. It is currently implementing a new “rare disease insert”, which aims to improve the patient experience through provision of a single person responsible for the co-ordination of care for hypermobility patients; I think that that was one of my hon. Friend’s constituents’ main asks. It also aims to improve the transition pathway from child to adult rare diseases services, including services for those with hypermobility syndromes.

Several centres in England deliver services for hypermobility, although, as we heard from the hon. Member for Halifax, not all of them are always accessible to everyone. They include two centres delivering complex EDS services, four delivering osteogenesis imperfecta and childhood osteogenesis imperfecta services, and a specialist centre for Stickler syndrome. Those centres help to co-ordinate specialist regional care and manage the transition to non-specialist NHS care. I did very much hear my hon. Friend’s request for a more co-ordinated service for his constituents. I encourage him to engage with his clinical commissioning group, as the idea has much merit. It could potentially secure better diagnosis and provide a better pathway for patients through discussion of the single point of contact, giving them much-needed continuity and a timeline for provision in Calder Valley and for patients more broadly.

My hon. Friend said that he thought virtual GP services would help people with hypermobility syndromes, because they would no longer have to travel all the time. He will be pleased to hear that virtual GP services are beginning to be rolled out in general practice. That means that patients will have the right to web and video consultations by April 2021, which I hope will also be of benefit.

As was announced by my colleague Baroness Blackwood this summer, we need a national conversation on rare diseases to help to inform and communicate. We will be engaging with patients, researchers and clinicians, gathering evidence, and identifying the major challenges faced in the field. We welcome the input from the hypermobility syndromes patient cohort and from healthcare professionals, and the work that they have done on the report.

Let me end by thanking my hon. Friend, who has spoken so passionately and so knowledgeably about this issue. I am grateful for the opportunity to discuss such an important report in the Chamber. We are dedicated to trying to improve the lives of all patients living with hypermobility, and, as my hon. Friend said, that is laid down in the NHS long-term plan and our implementation of the UK strategy. I hope that I have given a little reassurance to patients who are struggling for diagnosis that we are here to try to make the pathways stronger and diagnosis easier, and to improve the lives of all those affected by hypermobility syndromes and other rare diseases.

Question put and agreed to.