Complex Regional Pain Syndrome

Stuart Andrew Excerpts

Tuesday 9th July 2013 Westminster Hall

[Iain Stewart]

I have much sympathy with what the hon. Gentleman says, and if he bears with me, I will address training and research funding a little later.

The NHS Choices website sets out the quality of care and treatment that CRPS sufferers should receive due to the complex nature of the condition. My constituent should have been provided with a care team comprising a physiotherapist, an occupational therapist, a neurologist, a psychologist, a social worker and a pain relief specialist. He informed me that he has not received such care, as most health professionals whom he has encountered do not even know the condition’s acronym.

That leads me to my principal argument. If NHS clinicians do not sufficiently understand the condition, how will they be able to diagnose it properly and ensure that patients are adequately treated and cared for? The NHS Choices website says that it is hard to estimate exactly how common CRPS is because many cases go undiagnosed or misdiagnosed. I think the hon. Gentleman was referring to that point.

My constituent contends that possibly 250,000 people in England have not been properly diagnosed. He is understandably impassioned about the issue and has been carrying out his own research using American sources—it appears more research is being conducted into the condition in America.

From my own research, I learned from one study that as many as one in 3,800 people in England may be affected by CRPS. Therefore, going by the 2011 census estimates, 14,000 people could either have been misdiagnosed or remain undiagnosed. Although that might appear to be a small number by comparison with my constituent’s estimate, it does not diminish the issue’s importance.

The core principles of the NHS state that good health care should meet the needs of everyone and should be based on clinical need. Kevin Scardifield is unable to do the everyday things that other people take for granted. He was a police officer before the onset of the condition—a profession he greatly loved but had to give up. So debilitating is the condition that, by the middle of last year, he had been able to leave the house only six times, which was just for a few yards to the GP.

I am sure that Members can appreciate why this is such an important issue and why Kevin Scardifield has been campaigning hard for proper diagnosis and treatment. Since he made me aware of the condition, I have made a number of representations to the Department of Health, the local hospital, the primary care trust—now the clinical commissioning groups—and even the Department for Work and Pensions.

I am grateful to the Minister and his predecessor, the right hon. Member for Sutton and Cheam (Paul Burstow), for their replies to my constituent’s concerns when I brought them to their attention. Had my constituent felt that his concerns had been fully addressed, however, we would not be having this debate, so if the Minister will forgive me, I will raise a number of specific issues. First, as I have mentioned, people are either being misdiagnosed or remain undiagnosed because NHS clinicians do not appear to have sufficient awareness of the condition.

[Stuart Andrew (Pudsey) (Con)]

I congratulate my hon. Friend on raising the issue. Although I take an interest in health issues, CRPS is new to my attention. Only today, I was contacted by a lady from Leeds who is a sufferer, and listening to her story was very harrowing. Is my hon. Friend surprised, as I am, that there is only one specialist centre in the UK? That centre is in Bath, which is a long way from many places. If CRPS is diagnosed early, there is a high chance of it going into remission, which would be great for the NHS and, more importantly, for the patients involved.

[Iain Stewart]

My hon. Friend makes an important point, and I suspect that if we spoke to all our colleagues we would find that they, too, have been contacted by constituents with this condition. One of the points that I will make in a few moments is on the need for greater research and specialist services, so that the types of benefit that he rightly describes can be identified and delivered.

Secondly, the number of people diagnosed with the condition is unknown. Indeed, the Department of Health has informed me that it does not hold such records. My constituent informs me that, in 2010, he was told by NHS Direct that just over 11,000 people had been diagnosed in the United Kingdom. In 2012, he came across some information in the CRPS guidelines prepared by the Royal College of Physicians that quoted research suggesting a higher incidence of CRPS in Europe. On the back of that, he again contacted NHS Direct, and this time he was informed that it had been ordered to stop keeping records and to delete existing ones, as that responsibility would be undertaken by the Office for National Statistics. The ONS, however, replied that no such responsibility had been passed to it. Will the Minister clarify that issue and assure me that there is a strategy in place adequately to capture the number of people being diagnosed with CRPS? Will he also look into claims that specialists are failing to highlight the seriousness of the condition, particularly its potentially degenerative nature?

Thirdly, there does not seem to be an agreed pathway within the NHS for the treatment and care of those diagnosed with the condition. If there is, it was not reflected in the care that my constituent received. Will the Minister ensure that all NHS trusts and clinical commissioning groups follow the guidelines?

Fourthly, compared with the United States and other European countries, we are not doing enough to research the condition with a view to finding a cure and ensuring an improved quality of life for CRPS sufferers. While preparing for this debate, I observed that there was more information on the condition on US-based websites than on UK-based ones. I have also been unable to find UK charities or support groups for CRPS. Everyone can be proud of the fact that since the start of modern clinical trials, 39,179 trials have been made or are in progress to find a cure for cancer. The UK has carried out about 2,299 of them. The UK Charity Commission has 976 cancer charities on record, and the NHS spent more than £375 million between 2008 and 2012 on researching a cure for cancer. Clearly, that is a wonderful amount of research, but during the same period, only 76 trials on CRPS have been conducted worldwide. Holland, with a population of just over 16.5 million, has carried out three trials, and Switzerland, with a population of 8 million, has carried out two. The UK has a population of more than 60 million, yet I have been unable to locate a record of our carrying out any trials.

In addition, the NHS does not appear to have invested much in researching CRPS. I understand that one project was carried out last year in Bath, to which my hon. Friend the Member for Pudsey (Stuart Andrew) referred, but it was not aimed specifically at finding a cure, and it was funded by an American charity. Will the Minister look into funding for more UK research into the condition? Specifically, will he consider my constituent’s suggestion that a post be created within the Department of Health for a CRPS officer to liaise with specialist clinics around the world to collect, collate and disseminate papers and studies on the condition? My constituent explains that it would prove useful, as it was not until 19 years after the US first stated that guanethidine blocks were ineffective on RSD sufferers that our own specialists came to the same conclusion.

I hope that the Minister will address those matters when he replies, and I hope that this debate will help draw attention to this important issue, so that more people are properly diagnosed and adequately treated. I also hope that I have been able to do justice to the needs of sufferers such as my constituent. May I suggest that the Minister find time at some point in future to meet them, so that he can properly understand the sheer pain and agony that they face?