Hypermobility Syndromes: Healthwatch Calderdale’s Report
Holly Lynch Excerpts(4 years, 7 months ago)
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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.
Holly Lynch
I am grateful to my neighbour for giving way. I thank him for securing the debate and congratulate him on articulating a number of those medical conditions incredibly well. I have two constituents I am aware of who have a diagnosis of Ehlers-Danlos syndrome. I was incredibly disappointed earlier this year when the clinical commissioning group informed me that Manchester Royal Infirmary, which had been delivering a degree of care for those with hypermobility, was going to have to stop accepting tertiary referrals for that support. Not only are people struggling to get a diagnosis after years, but regional specialist care is then not available once they have received a diagnosis. We really need to address that.
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.
Community Pharmacies
Holly Lynch Excerpts(4 years, 7 months ago)
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Holly Lynch (Halifax) (Lab)
I beg to move,
That this House has considered the role of community pharmacies.
May I say what a pleasure it is, Sir David, to serve under your chairship this morning, and to have you join us for this important debate?
Between the ages of 14 and 18 I worked in a local chemist shop two evenings a week and some Saturday mornings. There were the usual first job responsibilities: restocking shelves, cleaning, and meeting and greeting customers and patients who were not always well, for a variety of reasons. I loved it, because there is never a dull moment in a pharmacy. I remember a frantic mother handing me dead headlice taped to a piece of cardboard, and someone asking me to run a pregnancy test on a bottle of cough medicine, before discreetly letting me know that it was actually a urine sample rather than cough medicine and that that was the only secure way she could find of transporting it to the chemist shop.
The shop was exactly what it said on the tin. It was a community pharmacy, and the whole community would walk through those doors for advice, medication and reassurance. I remember the older people, whose relationship with the pharmacist was the longest-standing and most trusted relationship they had with a clinical professional. I remember a long-term recovering addict, who would bring his daughter with him every day. We watched her grow up, and supported him as he worked hard to stay the course on his journey to recovery.
That is why community pharmacies matter, and it is why they work. However, it appears from the community pharmacy contractual framework announced in October 2016 that that was not appreciated. There was a reduction from £2.8 billion in 2015-16 to £2.68 billion in 2016-17 and £2.59 billion in 2017-18. That represented a 4% reduction in funding in 2016-17 and a further 3.4% reduction in 2017-18. When inflation is factored in, as well as all the services that pharmacies already offer free and whose costs they absorb, that was a near fatal blow to the service nationwide. The then Minister, the right hon. Member for North East Bedfordshire (Alistair Burt), told the all-party parliamentary group on pharmacy that he expected between 1,000 and 3,000 pharmacies to close, as they would no longer be viable in the face of the cuts, with multiples and chains of pharmacies best placed to survive, and independent and more rural chemists left at a disadvantage.
In March this year the Pharmaceutical Services Negotiating Committee found that 233 community pharmacies have closed in England since the Government funding cuts were introduced. Sixty-nine were independent pharmacies and a further 22 were independent multiples. The number of closures anticipated by the right hon. Member for North East Bedfordshire has not yet been reached. However, I have spoken to people in pharmacies, and others contacted me ahead of the debate, and many are operating at a loss, clinging to the hope that the funding arrangements will improve, but with a business model that, as the right hon. Gentleman predicted, is not viable.
The impact that the funding cuts have had on patients is really difficult to justify. The cost of delivering prescriptions to those who find it hard to leave the house was previously absorbed by local chemists, but that is no longer possible. Boots was the last of the big four chain pharmacies to start charging for delivery over the summer, with all patients having to pay £5 for delivery, or £55 for a 12-month delivery subscription, by the end of the year. All have some exemptions for particularly vulnerable customers, but Boots, LloydsPharmacy, Rowlands Pharmacy and Well have all reduced free deliveries, or started charging for delivery.
There is no funding for arranging drugs in trays. When I worked in a pharmacy, it was a big undertaking to arrange medicines in trays by time and day, predominantly for older people who needed that degree of support if they were to live well for longer by taking their medication at the right time and in the right doses. Pharmacies were delivering a degree of invaluable social care, and that is no longer possible in the present financial climate. We can all see what the consequences will be. Ultimately the result will be more costly clinical interventions.
In addition to the financial pressures that pharmacies face, drugs shortages are now becoming debilitatingly resource-intensive across the NHS. Pharmacies have no ability to absorb the costly hours spent sourcing drugs or speaking to GPs about possible alternatives. A Bristol GP, Zara Aziz, recently wrote in The Guardian of her experience of medicines shortages. She explained that EpiPen users in Bristol are now being told to use their old EpiPens up to four months after the expiry date. She also tells the story of a patient in acute distress from arthritis pain when a commonly used anti-inflammatory, Naproxen, suddenly became unavailable. Eventually, a very small quantity was found, but the patient was forced to use it sparingly, not as she had been prescribed, as none of the alternative anti-inflammatories would have been suitable for her.
My hon. Friend the Member for Redcar (Anna Turley) shared with me a photo of a poster from Pharmacy Magazine, which has gone up in her local hospital. It says, “Please don’t blame us for the NHS medicine shortages. It is a nationwide problem. Please ask your local MP to help.” The poster included contact details of local MPs handwritten on the bottom. We very much hear those concerns, and we are here to ask the Minister to get a grip on this problem.
Shortages are caused by a combination of different issues. The implications of Brexit are inevitably a factor that will play out over the coming weeks and months. However, we know that the NHS and the UK are potentially losing out to more profitable and attractive markets. In addition, the stockpiling, as a precaution, of certain drugs that are harder to source, coupled with the deliberate and more alarming manipulation of the markets by some wholesalers to deliberately push up prices, is having a detrimental effect. New regulations are also having an impact on manufacturing processes.
On top of that, cash flow is a massive challenge in community pharmacies. Community pharmacies pay out for drugs and are reimbursed by the Government the following month. The situation is made even tougher still, however, because they are not always reimbursed what they have paid out for drugs, particularly for drugs that are in short supply. By law, pharmacies have to do everything in their power to source a drug and dispense it, even where prices have become inflated due to a shortage. Let us take Naproxen as an example. One of my local pharmacies tells me that earlier this year the cost of a box shot up from about 26p to about £15. The tariff price paid by the Government to reimburse pharmacies for Naproxen peaked around February, at £12.50 a box. The medicines shortage is having the perverse effect of forcing pharmacies to dispense at a loss. In previous budgets, there might have been just enough for the pharmacy to absorb this cost. Those days are long gone. The system is clearly no longer fit for purpose.
Earlier this year, the Government introduced the serious shortage protocol in the Human Medicines (Amendment) Regulations 2019. It was intended to be a safety mechanism to help cope with any serious national shortage. It gives pharmacists the ability to dispense a reduced quantity, alternative dosage form or generic equivalent to that stated on the prescription. There would be a small payment to pharmacies for undertaking that process. Despite pharmacists and GPs feeling that they are spending unprecedented amounts of time sourcing medicines or researching alternatives, not a single drug has appeared on the list, which means that pharmacies and GPs do not get paid any extra to compensate them for the time they now have to dedicate to that element of dispensing.
Although there are no drugs on the serious shortage protocol, there is a separate concessions list, which acknowledges that, due to a shortage of a drug, the price has changed. At the end of September, there were 45 drugs on that concessions list. Again, inclusion on that list does not acknowledge the time involved in having to source the drugs, which is becoming the largest part of the pharmacist’s day. Nor is there any attempt to fund that work.
There was some hope for community pharmacies more broadly in the community pharmacy contractual framework published in July, which takes effect from October 2019 through to 2023-24. The five-year deal commits to not cutting the budget any further. However, when inflation is taken into account, it will still see pharmacies unable to meet costs, for all the reasons I have outlined.
Strangely enough, what the framework does do is realise the potential for pharmacies to alleviate pressures on the wider NHS, paving the way for a much more integrated approach. The 111 service is now able to refer a patient directly to a pharmacy for an appointment. The framework seeks to expand the delivery of clinical services in pharmacies. It is all great stuff, which is very welcome, but I return to the clear warning given by the then Minister back in 2016 that between 1,000 and 3,000 pharmacies will not be viable and will be forced to close if overall funding does not increase.
Mr Gregory Campbell (East Londonderry) (DUP)
I congratulate the hon. Lady on securing the debate. Given the pressures all our A&Es and acute hospitals face, does she agree that the community pharmacies in many areas across the UK do a magnificent job—particularly those specialised pharmacists who relieve the pressure on A&Es? If community pharmacies are put at risk and we lose them, there will be even more pressure on our A&Es and acute hospitals at a most awkward time for our society.
Holly Lynch
I could not agree more. I thank the hon. Gentleman for making that important point. It was very welcome that in the community pharmacy contractual framework—for the first time, I think—the Government really did understand that. However, the funding to allow pharmacies to survive long enough to deliver those services has not been forthcoming. For all its aspirations to deliver more clinical services, a pharmacy that has been forced to close can deliver diddly-squat. Does the Minister accept that community pharmacies’ potential will be realised only when they are funded to survive?
Like many colleagues, I am incredibly concerned about the impact of medicine shortages, both on the NHS and on patients themselves. It is contributing to the mix of factors that are piling unbearable financial pressure on our local chemist shops. I hope the Government have a plan to respond and keep our trusted, effective community pharmacies open.
Several hon. Members rose—
Living with Dementia
Holly Lynch Excerpts(4 years, 10 months ago)
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Holly Lynch (Halifax) (Lab)
As always, Mr Paisley, it is a pleasure to serve under your chairmanship. I join colleagues in paying tribute to my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for her leadership and for the compassion she shows in everything she does. I am a Dementia Friend because of her, having attended one of her workshops here in Westminster in 2016. I have since become a dementia champion and was asked by the Alzheimer’s Society to run its workshop for Dementia Friends at the 2016 Labour party conference to 80 colleagues and members, which was quite a challenge for my first workshop. I am incredibly proud to have played a very small role in training some of the UK’s 2.8 million Dementia Friends and sending them out into their communities to make them that bit more dementia-friendly. Once again, I pay tribute to my hon. Friend for her role in that.
This debate gives us an opportunity to evaluate where we are against the aspirations set out in the Government’s Challenge on Dementia 2020, but also to shine a spotlight on some of the good work that is being done at a grassroots level—not least in Halifax, thanks to some truly inspirational and passionate volunteers. As we have heard time and again, 850,000 people are living with dementia in the UK, a figure that is expected to double by 2040. One in 14 over-65s is living with dementia. If that is not an incentive to us all to do everything we can while we are able and empowered to do so, I do not know what is.
I recently wrote to older people in the Sowerby Bridge area of Halifax on behalf of the campaign to make Sowerby Bridge a dementia-friendly town, and invited them to a day of action to learn more and see the support available in their area. That campaign is driven by Shabir Hussain of Bluebird Care in Calderdale, who is a thoroughly committed community activist, along with Chris and June Harvey, who are truly dementia champions, and who run the wonderful Memory Lane Café for people with dementia and their carers. With their trustees and volunteers, Chris and June run pop-up cafés in churches and community centres in Sowerby Bridge and Halifax, with a dementia-friendly programme of games and crafts, information and support, cakes, music and conversation. Some 540,000 people in England alone care for those with dementia, and estimates suggest that one in three of us will be involved in caring for someone with dementia at some time in our lives, so a dementia-friendly environment that offers a thoroughly positive experience for all those involved in living well with dementia makes a massive difference to the regular attenders.
We also have a young onset dementia and Alzheimer’s group, or YODA for short, which was set up by Julie Hayden and provides support for younger people with dementia and for their carers and families. As we have heard, it is often overlooked that 42,000 people of working age live with dementia. Their requirements can be quite different. People diagnosed with dementia at that time of life usually present between the ages of 30 and 65 and are most likely in work, potentially with dependent children, older parents to care for or financial commitments such as a mortgage to consider. For that group, as other hon. Members have said, living well requires a different support package from that required for over-65s.
I would be remiss not to highlight the work of Inspector Neil Taylor of West Yorkshire police, who is a dementia champion and the chair of Dementia Friendly Todmorden. He has gone over and above in promoting best practice within West Yorkshire police and his local community—all credit to him. West Yorkshire police have introduced the Herbert protocol, named after George Herbert, a veteran of the Normandy landings who lived with dementia. The police and other agencies encourage family and carers to complete a form with useful information that could be used in the event of a vulnerable person going missing. The form includes vital details such as medication required, mobile numbers and places previously located, along with a recent photograph. In the event of a loved one going missing, the form can be handed quickly to the police to speed up the search and assist in supporting that person, who may be lost and confused when they are located. I recommend that all forces adopt such a protocol as soon as possible.
We are blessed with dedicated volunteers who have made Calderdale a better place to live with dementia, but what if Shabir, Chris and June, Julie, Neil and others like them were not there? The environment might be quite different without their leadership. How can we ensure that such work is supported and replicated elsewhere?
I give credit where it is due. David Cameron’s Government launched the dementia challenge in 2012, which sought to create dementia-friendly communities, with work led by the Alzheimer’s Society; drive improvements in health and care; and improve research, with a commitment that funding for dementia research be doubled to more than £66 million by 2015. Under Dementia Challenge 2020, as the programme was called when it relaunched in 2015, the Government committed to investing more than £300 million in dementia research and medical innovation.
It has been estimated that dementia costs the UK economy £23 billion a year, which is more than the costs of cancer, heart disease or stroke. With the numbers of people living with dementia expected to double by 2040, predicted costs are expected to treble alongside that increase. For anyone not yet won over by the human arguments for committing to research for dementia, the economic arguments speak for themselves.
To be fair to David Cameron, I believe that he understood the issue. I hope the Minister can assure us that she will seek to make it a continuing priority for the incoming Prime Minister. However, there are still areas in which I would like to see things standardised across the UK to support people, particularly younger people, who live with dementia, as well as their families and carers. To have a dementia diagnosis in the workplace, with dependants or financial commitments, must be incredibly daunting, but with a renewed focus on that group, and with changes to our understanding of the support that those demographics need to live well, we can make a positive difference. I thank the APPG on dementia for its report “Hidden No More: Dementia and disability”, which calls, quite simply, for
“equality, non-discrimination, participation and inclusion.”
I wholeheartedly endorse those aims.
Ian Paisley (in the Chair)
I thank colleagues for their immensely good self-imposed discipline, which will allow the Opposition spokespersons and the Minister 10 minutes each to speak.