Hypermobility Syndromes: Healthwatch Calderdale’s Report

Debate between Craig Whittaker and Jim Shannon

Monday 7th October 2019 Commons Chamber

[Craig Whittaker (Calder Valley) (Con)]

Healthwatch in Calderdale, like Healthwatch organisations across England, is the voice of people in its area on health and social care matters. It tells NHS service providers and commissioners about patients’ experience of care and holds them to account, and has a say in how local services are delivered and designed.

As a very rough rule and guide at Healthwatch Calderdale, a trigger to indicate that there is a particular issue in an area of health or social care is when it receives about three complaints on the same issue at the same time. Hon. Members can therefore imagine the concern when Healthwatch Calderdale began to hear of difficult NHS experiences from a large number of adults with hypermobility syndromes, both at events and via its telephone advice service. The level of concern was so great that, for the first time since its inception, a joint piece of work was undertaken between all local Healthwatch areas across Yorkshire and Humber, with Healthwatch Calderdale taking the lead. Approximately 250 adults with hypermobility syndromes took part in the project—all relating stories of difficult NHS care. I will speak more about the findings of the report shortly, but first I want to give the House an outline of what hypermobility syndromes are.

Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement—something that I have not been able to do for many, many years. Joint hypermobility is common in the general population, especially in childhood and adolescence, in females, and in people of Asian and African-Caribbean descent. In many people, joint hypermobility is not problematic at all. It can even be a bonus, especially for sportsmen or sportswomen. However, this debate is neither about athletics, nor is it about party tricks. It is about problematic hypermobility linked to chronic ill health. It is about people who experience symptomatic hypermobility that not only affects the joints, but also causes very challenging symptoms in many other body systems including the digestive system, the nervous system, the skin, the bladder, the cardiovascular system, the teeth and the immune system. It is these people who are described as having a hypermobility syndrome.

The most common of these syndromes is hypermobility spectrum disorder. Other conditions include heritable disorders of connective tissue such as Ehlers-Danlos syndrome, Marfan syndrome, osteogenesis imperfecta and Stickler syndrome. Although these are all conditions in their own rights, they are all complex, chronic conditions that are frequently associated with co-morbidities that require multi-disciplinary healthcare teams to diagnose, treat and manage.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving way and for bringing this matter to the House for consideration. People suffering from hypermobility syndrome feel that they have to fight to be believed, fight to be seen, fight to be diagnosed and fight to receive treatment—they are tired of simply fighting. Does he agree that the NHS in Calderdale and further afield must do better and must believe and treat these people?

[Craig Whittaker]

The hon. Gentleman is right in a lot of what he says, but the thing about hypermobility syndromes is that they are incredibly complex. As I said earlier, things like the digestive system, the immune system and teeth can all be factors. It is not like when someone goes to hospital with a broken leg, and we know what the problem is. There are multiple complexities around this disorder, so it is difficult from a professional point of view, which I will speak about later, but he is right in much of what he says.

From the Healthwatch work on the subject, it is clear that many people—specifically those with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder—are not receiving the appropriate NHS care, as the hon. Member for Strangford (Jim Shannon) indicated. It is not clear how many people in the United Kingdom are affected by hypermobility syndromes. Hypermobility is often misdiagnosed as fibromyalgia, osteoarthritis, seronegative arthropathy, psychogenic rheumatism, depression or chronic fatigue syndrome. I do not know about you, Madam Deputy Speaker, but after that description, I need to lie down in a darkened room. So imagine how patients with hypermobility-related problems feel when they have to battle alone with immense health problems, often for years before obtaining a diagnosis, only then to face immense difficulties in accessing appropriate NHS healthcare to manage their complex and multi-system disorders and conditions. These patients describe feelings of being let down by the system, as well as huge frustration at both the widespread lack of understanding about their condition from medical professionals and the lack of appropriate care for their condition.

--- Later in debate ---

[Craig Whittaker]

My hon. Friend and neighbour is right. Because there is a lack of understanding about this syndrome and because, not only at GP level but in some specialist areas, areas that do particularly well on this issue are now having to close the list to outsiders because they are becoming over-subscribed. She is absolutely right; that is one of the issues. When I get to the end of my speech, one of my recommendations, which the Minister can hopefully address, is having a regional centre for this condition.

Healthwatch’s report was published in July this year, and it focuses primarily on patient experiences. It presents the overwhelming negative NHS experiences of adults with hypermobility syndromes, and it makes for challenging reading. It is 70-odd pages, and it is not a pleasant read at all. The report took evidence from 252 people via focus groups and a questionnaire. Approximately 86% of the participants had a diagnosis of hypermobile Ehlers-Danlos syndrome, or what would now be termed hypermobility spectrum disorder. A further 13% had other diagnoses linked to hypermobility syndromes. It is precisely those people who are presently excluded from NHS specialised rheumatology services, and it is those people on whom I would like to focus this evening.

The report identifies problems with NHS care in many different areas. It highlights that people are experiencing difficulties obtaining a diagnosis: 76% of respondents indicated that obtaining a diagnosis had been challenging; 22% described the process as difficult; and a staggering 54% stated that it had been very difficult. Frequently, people described the diagnostic process as leaving them feeling depressed, alone and isolated as a consequence of the lack of understanding that appeared to be the norm among professionals. This and the level of disbelief by professionals, as the hon. Member for Strangford pointed out, have led to people doubting themselves, despite their symptoms and, of course, their experiences.

Common terms used to describe how the diagnostic process made people feel included being angry, belittled, desperate, and feeling like a liar or a fraud, and some even said they were feeling as though they were going a little crazy. By contrast, obtaining a diagnosis generated feelings of hope and reassurance, and the feeling that they had been vindicated or were relieved at having an explanation of their difficulties.

On the road to diagnosis, many tests and procedures were commonly performed—sometimes repeatedly, sometimes in isolation and sometimes in conjunction with others. Many people reported that they had had many blood tests, scans and X-rays. A number of respondents spoke of being tested exhaustively over many years. For some people, this extensive testing was a route to an eventual diagnosis and, in some cases, supported interventions, but for others, this resulted in delaying the diagnosis, misdiagnosis and delayed support. A pathway would not only be beneficial to patients, but would also reduce the costs and associated wastage to the NHS of all the unnecessary tests, which are often carried out on a repetitive basis, as they are not giving the anticipated results at the time.

Participants reported that between one and six health professionals were involved in the diagnosis. One significant theme of the responses generally was the failure of medical professionals to link together the variety of symptoms and health issues being reported and a focus on the presenting symptom only. Perhaps unsurprisingly, many participants said that they had received other diagnoses, rather than a diagnosis of hypermobility syndrome. Altogether, a staggering 62 other conditions were named during the process.

The complex and diverse symptoms resulting from hypermobility syndromes have led to many people being misdiagnosed. They were told, for example, that their symptoms were related to mental health issues or mental illness, such as depression, anxiety or stress, and this resulted in subsequent referrals to mental health services, as health professionals could not find a physical cause of the symptoms. People also reported that health professionals had ascribed the symptoms to excess weight, clumsiness or lack of physical exercise. Misdiagnosis, partial diagnosis or stereotyping left people feeling upset and patronised by health officials and led to feelings of anger, frustration, rejection and defeat.

Inadequate knowledge among health professionals was another key theme of the report, and that also emerged from the data. The majority of the respondents referred to health professionals as not aware of, not knowing about or not believing in the wide-ranging symptoms and the health and life impact of hypermobility syndromes on the patients. GPs were specifically mentioned in this regard, and rheumatologists and physiotherapists also received mixed feedback about their knowledge. Some people who had a diagnosis also talked of medical professionals disbelieving the conditions, with some being told, “It’s all in your head,” or assuming that people were just after drugs, rather than genuinely being in pain, despite the diagnosis.

Another key theme that emerges from the data is poor communication between health professionals, both between departments in the same service and between one medical facility and another. Communication between professionals is by no means consistent. Communication failures occur frequently and conversations are repeated at consultation. Again, this experience is described as exhausting and demoralising. A number of participants also reported difficulties in persuading GPs to refer them to consultants. Most people who responded to the survey said that they had either no NHS care or inadequate NHS care. The life impact of these difficult NHS experiences is significant, with people having to give up work, experiencing difficulties in education, having problems with social relationships, the breakdown of families and financial problems, too.

[Jim Shannon]

I thank the hon. Gentleman for giving way again. He outlines the case for people physically, emotionally and mentally, but it is also about the follow-on. If people cannot work, they need benefits and help. If doctors do not understand the intricacies of the health condition, how can they back up constituents’ claims for benefits? Does the hon. Gentleman sometimes become bewildered with the system?

[Craig Whittaker]

It is not I who become bewildered with the system, but the patients who are incredibly frustrated at the whole process. As the hon. Gentleman says, not just with pre-diagnosis but post-diagnosis, there is a lack of professional understanding. Unless someone has a good consultant or GP who understands the system, the things we have talked about—the frustration, pain, stress and anxiety—go on for years. The hon. Gentleman is, again, absolutely right.

Ironically, people feel that they have to manage their own cases entirely without medical support and sometimes without fully understanding it themselves, researching the condition so that they can then ask for what they think they might need. This was often stressful for the respondents, with the stress causing further problems. Some people spoke of having some NHS care, but for some people the only care they received was pain management, often without review. There are several examples of respondents being prescribed opium or strong medications, but they said it was without adequate medical support or review. In the few cases where people reported having good experiences of NHS care—there were some—this appeared to be generally after moving around the country, changing GPs or hospital specialists. This usually occurred over a long period.

It should be noted that not many people commented on social care experiences and this in itself may—there is no evidence—reflect the lack of involvement and awareness of the issues among social care staff. A few people have received some care or support via social care. The most frequently reported were aids and adaptations for the home. Some people have also been given additional support for personal care and social support.

The report details exactly what actions all the local Healthwatch organisations in Yorkshire and the Humber will take to raise the issues with local NHS service providers and commissioners. What is it that those who have experienced this poor level of care are asking for from the Government, NHS England and our strategic health authorities? I have gone through the common asks, but I have come up with five that I and the authors of the report think are probably the most important.

First, we are asking for improved knowledge and awareness of hypermobility syndromes and the related conditions among health professionals across the whole of the NHS. Secondly, we are asking for a dedicated care pathway with faster referrals and a specialist service of some form, such as a specific regional specialist centre. People felt that that would help to address the current fragmented care that many are receiving. Thirdly, we are asking for the ability to access medical support where needed for services such as physiotherapy, without the need for a new referral. Each time a course of physiotherapy is required, people currently have to go back through the process to be referred for it. Fourthly, we would like to see the use of technology, such as video or telephone appointments, to access medical professionals. This would help people to better manage fatigue by removing the requirement to be physically present at the appointment. Finally, we would like improved communication, co-ordination and information sharing between health and social care, either as part of a specialist service, as we have discussed, or simply just as good practice.

Some of those suggestions regarding better care, such as digitalisation and integrated care, fit very well with the NHS long-term plan. It is very clear, however, that other additional actions are required to improve NHS care for this group of patients. It is important to remember that the vast majority of people who responded to the Healthwatch hypermobility syndromes survey are not those who are referred to the specialised rheumatology services, which are commissioned by NHS England. They have hypermobile Ehlers-Danlos syndrome or what is known as hypermobility spectrum disorder. They are specifically excluded from the Ehlers-Danlos national diagnostic service and, at present, have very poor experiences of that NHS care, which, they report, impacts incredibly negatively on their lives.

Thank you, Madam Deputy Speaker, for your time this evening, and I look forward to hearing my hon. Friend the Minister’s response.

Flood Insurance for Businesses

Debate between Craig Whittaker and Jim Shannon

Monday 8th February 2016 Commons Chamber

[Craig Whittaker]

I will come on to what I want the Government to do a little later, but I will also explain what is currently taking place. The hon. Gentleman is absolutely right that the excesses for small and medium-sized businesses are phenomenally unaffordable, as are some of the premiums on offer.

In addition to the written question that I mentioned earlier, the Prime Minister recently stated that he was looking very carefully at this issue and that, although some small businesses are highlighting concerns, the insurance companies, via the Association of British Insurers, state that they would not turn down any small business for flood insurance.

[Jim Shannon (Strangford) (DUP)]

Flooding has become worryingly regular across the whole of the United Kingdom of Great Britain and Northern Ireland. Mother Nature cannot be ignored. Does the hon. Gentleman agree that we should consider setting up a formal structure of permanent support for businesses that are affected by flooding, outside of the insurance industry?

[Craig Whittaker]

I am not sure that that is the sole responsibility of the Government. I think that there needs to be a joint approach between the insurance industry and Government, but, again, I will come on to that during my speech.

Although the ABI said that it would not turn down any small business for flood insurance, I can tell Members that, having spoken to hundreds of businesses in the Calder Valley over the past few weeks, it has become apparent that many small businesses are experiencing difficulties in accessing flood insurance and that this uncertainty, coupled with the crippling costs that now face some businesses as a consequence of the floods, is jeopardising their future. Although I note the Minister’s response that the Government are not aware of any evidence of a systemic problem, I question the basis on which that conclusion has been reached.

Last July, the Department for Environment, Food and Rural Affairs published the report “Affordability and Availability of Flood Insurance: Findings from Research with Businesses”. A cursory look at the report might lead one to conclude that there is not a problem after all. The research found that uptake of insurance across businesses is high. The survey showed that the vast majority of small businesses arrange commercial insurance cover for their premises and that there is no significant difference between small businesses that are located in high flood-risk areas and those that are not.

However, a more detailed consideration of the report, particularly the basis on which the evidence has been collected, provides a different picture. The headline figures from the report come from a secondary source, a small business survey run by the Department for Business, Innovation and Skills. The DEFRA report acknowledges that the BIS survey data contain only small numbers of businesses located in high flood-risk areas. As such, one may legitimately question how valuable such data are when considering the issue of insurance for businesses in high-risk areas. The main focus of the DEFRA report was a series of in-depth interviews with businesses, and it is that component that forms the main evidence base. Only 25 businesses were interviewed, the majority of which were not in high flood-risk areas. The overwhelming majority were very small businesses, employing fewer than 10 people, and only one manufacturing business was included in the sample. My point is that the evidence base of the DEFRA report is not particularly credible and, as a consequence, the report is of limited value. If they are to appreciate the extent of this issue the Government and the Association of British Insurers need to speak to businesses in areas of high risk.

Staying Put Agenda

Debate between Craig Whittaker and Jim Shannon

Tuesday 21st January 2014 Commons Chamber

[Craig Whittaker]

The hon. Gentleman is absolutely right. I believe that nowadays the average age of young adults who live at home with their parents is 26 or 27, so why on earth should we cut these young people off all of a sudden when they turn 18, and send them off to fend for themselves? It just does not seem right.

I would argue, as would many others, that young people in residential care are the most vulnerable of all. The majority have been through the fostering system, and have found themselves in placements that break down. The average number of placements for each child in the care system is seven, and the figure is generally much higher for those in residential care. Ben Ashcroft, who is a care leaver, had a total of 37 placements, and wrote a book about his experiences called “51 Moves”.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on raising this important issue. Does he agree that continuity is essential for young people whose lives have been turned upside down and who have reached a critical point in their lives, and that they must be in a place that they can look on as their own and can see as being long-term rather than short-term?

[Craig Whittaker]

The hon. Gentleman is right. Traditionally, there has been a severing of the relationship between the state and these young people. It is vital for us to provide a long-term plan and security for all of them, not just for a section of them.

Another young man who contacted me recently had had more than 85 placements. His case and Ben Ashcroft’s are extreme, but young people in residential care have far more than the average seven placements.

Why should we want to discriminate against the most vulnerable members of an already vulnerable group? Most of us who are close to the system understand that it is not quite as simple as delivering foster placements until young people reach the age of 21, but the Government have been very quiet about those in residential homes, and about what some of the solutions might be. The Staying Put agenda has been piloted, tried and tested for young people in foster care, but nothing has yet been piloted for those in residential care. We need, at the very least, an announcement from the Government that there will be such pilots, and an indication from them that young people in residential homes can have the same rights and entitlements as those in foster placements until a long-term solution is found. However, the silence is deafening.

I understand the caution, but I do not believe that young people who are in placements now, who are settled, and who will benefit from remaining in those placements until they are 21 should have to move elsewhere simply pending further research. They have needs now. Some will be facing failure, destitution, homelessness, exploitation and all the other risks that young people face on their own. That is happening now—not in the future, but now. Those young people should not be placed at risk pending further research.

One of the Government’s concerns is that allowing young people to remain in children’s homes after their 18th birthday may cause problems for younger children placed, and that safeguarding issues could be involved. I struggle to see how a young person who is settled in a children’s home and enjoys a positive relationship with staff and peers should suddenly become a safeguarding risk when he or she turns 18, having never been so before.

Some people argue that it is too soon to include changes in the leaving care arrangements for children placed in children’s homes by April 2014. I see no reason why those who are settled in placements, enjoy positive relationships and want to stay with the agreement of those in charge of their placements should not be supported and allowed to do so. The Government should give a commitment to support all young people leaving care until they are 21 by April 2014, while work is being done to establish how than can best be achieved.

If cost is the issue when it comes to including the 9% of young people in residential care in the amendment, I must ask what the cost is of supporting young care leavers in the criminal justice system. I would ask about the costs to the benefits system and the mental health system, and the huge costs associated with homelessness.

I recently highlighted a potential saving—and a good way of paying for such a scheme—that would involve ensuring that the birth parents did not continue to claim family benefit for the young person. Evidence from inquiry workshops relating to the report on entitlements produced by the all-party parliamentary group on looked-after children and care leavers showed that several young people on those workshops had birth parents who were still claiming child benefit from the state on their behalf, even though they had been in care several years.

The law says that local authorities should stop the benefit when a child is taken into care, but in reality that practice is rather hit and miss. If the Department for Work and Pensions incentivised local authorities to stop the benefit by giving them, say, half the child benefit, we would have a win-win situation, with savings for the DWP and extra money to fund a scheme for local authorities. Sadly, however, the DWP fails to admit that this is an issue, despite those young people saying that it is.

The changes in the Children and Families Bill are being made to improve the support for young people leaving foster care. However, the changes, which will in effect increase the care leaving age for many fostered children but not for those in other residential settings, could have unintended consequences. They risk creating a two-tier care system, in which children in foster care receive longer aftercare support than those in residential settings. They risk creating an “underclass” of children in residential care who will still have to leave care at 18. They risk reducing real choice for children, as they will be compelled to accept family care in order to gain better aftercare. They also risk creating serious issues for social workers when family placements are breaking down, because the social workers might repeat family placements in an effort to protect aftercare instead of considering the best option for the young person, which might include a residential care option. Finally, they risk creating a negative impact on the self-image and confidence of children in residential settings other than foster care, who might feel undervalued and discriminated against by a change that excludes them through no fault of their own.

I would like to ask the Minister why young people in residential settings who are settled in placements, who enjoy positive relationships and who want to stay, with the agreement of their placement, should not be allowed and supported to continue to do so? There are no reasons why that cannot be done while the research into the best long-term options is ongoing. What is the Minister going to do to address any possible gross discrimination? Will he tell those young people what the Government’s plans are for pilots for a long-term solution that will give them the same support as young people in foster care? The brilliant amendment to the Children and Families Bill would represent a fantastic advancement for all young people in care, not just those in foster care.