Complex Regional Pain Syndrome

Norman Lamb Excerpts

Tuesday 9th July 2013 Westminster Hall

[The Minister of State, Department of Health (Norman Lamb)]

I congratulate my hon. Friend the Member for Milton Keynes South (Iain Stewart) on securing this debate on an issue of intense importance to people who suffer from complex regional pain syndrome. The condition can be debilitating, with a devastating effect on sufferers and their families. I know that there are those, including my hon. Friend’s constituent, who campaign tirelessly to raise awareness of the condition. The description that he gave of what people go through—attempts at self-amputation, for example—are unimaginable.

I pay tribute to Mr Scardifield for his persistent campaigning to raise awareness. It is highly laudable that he has chosen to campaign and maintain the pressure for increased understanding. The experience that my hon. Friend described—the diagnosis was missed by several clinicians, and there was no proper care team or personal care plan—is of concern. I am grateful to him for alerting me to the extent of the challenge faced by his constituent. One great benefit of Adjournment debates such as this is that they ensure that Ministers and officials focus on a particular condition that might not otherwise get the attention it needs. I am grateful for this opportunity. I hope that this debate will prove informative for those here who wish to learn more about the condition and be helpful to those affected, as I say more about the help and support that ought to be available for CRPS sufferers and the research into the condition that is currently under way.

Although it has been recognised as a medical condition for more than 100 years, diagnosing CRPS at its earliest stages remains a problem, as my hon. Friend rightly said, because it is often misdiagnosed or completely undiagnosed. The explanation is threefold. First, CRPS is relatively uncommon and patients do not routinely present to GPs with it. When the Department looked at the representations that we have received on the subject over the last few years, the number of individuals who have approached us is small. The fact that the condition is relatively uncommon and that GPs do not come across it that often creates a problem in terms of their capacity to diagnose it accurately.

Secondly, the range of symptoms associated with CRPS are shared with a number of other, more common conditions, so that when patients do present, they may not be correctly diagnosed in the first instance. Thirdly, there is no single diagnostic test that accurately identifies the condition; a diagnosis is made primarily by excluding other conditions with shared symptoms that can be accurately diagnosed. Those difficulties also mean that there are no reliable figures for the number of people living with the condition, and estimates produced by researchers and clinicians vary considerably, as my hon. Friend said in his speech.

I understand his concerns about having a clear picture of the number of people affected by CRPS. I will approach NHS England to ask whether there is any scope to improve our understanding of how many people are diagnosed with the condition. Ultimately, I think that we can all agree that a better understanding of the extent of the condition and the numbers affected would be a considerable advantage. Let us explore whether it is possible to achieve greater accuracy.

As my hon. Friend may be aware, since 1 April 2013, NHS England has been responsible for delivering improved outcomes for people with long-term conditions such as CRPS.

[Jim Shannon]

On the subject of statistics and information, does the Minister intend to make contact with the regional Administrations, whether in the Northern Ireland Assembly, the Scottish Parliament or the Welsh Assembly, to ensure that all the information comes together so we can galvanise action and respond better?

[Norman Lamb]

I will certainly explore the possibility of understanding how much information is available to the devolved Administrations to increase our understanding of the prevalence of the condition. They may be in exactly the same position as England, where our understanding of the prevalence is ultimately still limited, but let us explore that further.

NHS England draws on a wide range of clinical advice when developing commissioning policies and statements. It has a specialised pain clinical reference group to provide expert clinical advice on pain issues. I will therefore put forward my hon. Friend’s concerns about the need for CRPS expertise.

Turning to the identification of CRPS, an increasing range of guidance is available to improve awareness of it among members of the public and health professionals to support early diagnosis. NHS Choices, to which my hon. Friend referred, provides comprehensive advice on the causes, symptoms and treatment of the disease. More detailed clinical guidance is provided via the NHS Evidence website.

In May last year, the Royal College of Physicians published a guideline for clinicians on CRPS, setting out best practice on the identification and management of the disease. The guidance was developed with the involvement and endorsement of 21 key organisations involved in the care of people with CRPS, including the Royal College of General Practitioners, the British Orthopaedic Association, the British Pain Society, the British Society of Rehabilitation Medicine and the British Society for Rheumatology, to name but a few. I am confident that that collaborative guidance will prove useful in supporting clinicians to identify and treat patients with CRPS more effectively. When such guidance, produced by clinicians, is developed, one does not achieve a sea change in understanding overnight. It takes time to get the message across, in particular throughout the whole of primary care. The production of the guidance, however, is the starting point, and it will aid clinicians in diagnosing and treating appropriately.

Once a patient has been diagnosed with CRPS, a range of treatment options is available. Unfortunately, there is no cure for the condition, but many patients with pain disorders can be managed through routine primary and secondary care once they are appropriately diagnosed. For patients with CRPS, treatment can involve: physiotherapy; occupational therapy; a neurologist to examine the effect on the nervous system; sometimes a psychologist, who may be appropriate, because of the psychological problems caused by living with CRPS, as well as with a host of physical health conditions; a social worker for advice about what extra help and services are available; and a doctor or other health care professional trained in pain relief, which is critical.

NHS England is aware that more needs to be done to identify those patients with the most severe and complex chronic pain who need access to nationally commissioned specialised services. NHS England’s specialised pain clinical reference group is working with the royal colleges and the British Pain Society’s guidelines to ensure that the needs of those patients are appropriately met.

I am aware that the absence of clinical guidance from the National Institute for Health and Care Excellence is a real concern of patients with CRPS. I am advised, however, that NICE is consulting on a short clinical guideline on the pharmacological management of neuropathic pain, including CRPS. The draft guidance, setting out recommendations for further research, highlights the need for more research into CRPS. Final guidance is expected for publication shortly, in October of this year. In addition, a quality standard topic on pain management in young people and adults has also been referred to NICE for development. Quality standards are a concise set of statements designed to drive and measure priority quality improvements within a particular area of care; they support commissioners to be confident that the services they are purchasing are high quality, cost-effective and focused on driving up quality.

My hon. Friend specifically raised research into CRPS. The Government are supporting a range of research projects into the condition, including a major trial of low-dose intravenous immunoglobulin treatment, funded via the Medical Research Council and costing more than £650,000. The investigators involved have previously treated patients with IVIG and reported encouraging results on pain relief in a pilot trial. IVIG may provide pain relief for patients for whom classical treatments are not satisfactorily effective. If IVIG treatment is proved effective, the trial may also stimulate research on the efficacy of IVIG in treating other chronic pain syndromes.

The National Institute for Health Research clinical research network is also supporting a multi-centre international study to define recovery and the priorities for recovery from the perspective of patients with CRPS. The NIHR welcomes high-quality funding applications for research into any aspect of human health, including CRPS, and judges them on an objective basis.

More generally, I reassure my hon. Friend of the Government’s commitment to improve outcomes for the 15 million-plus people in England who are living with a long-term condition, including those with CRPS. Through the mandate—the set of Government priorities for NHS England—we have asked NHS England to make measurable progress towards making the health service among the best in Europe at supporting people with ongoing health problems to live healthily and independently, with much better control over the care that they receive.

Through the NHS outcomes framework, we will monitor the performance of the NHS in supporting people with long-term conditions, such as CRPS, to live as normal a life as possible and to improve their quality of life. Improvements will be measured in three main areas: how well the NHS is performing in supporting people to look after themselves; how well a person is able to live as normal a life as possible; and how successfully the NHS manages long-term conditions by looking at unnecessary hospital admissions and excessive lengths of stay in hospital. The improvement areas are mirrored in the clinical commissioning group outcomes indicator set—apologies for the jargon—which will be used to hold CCGs to account for and to provide information for the public on both the quality of services and the health outcomes achieved through commissioning.

At service level, the new NHS improvement body, NHS Improving Quality, has made the development of evidence-based tools for the management of long-term conditions a key improvement programme for 2013-14. Interventions will involve care plans, care co-ordination, use of technology, risk stratification, self-care and, crucially, the role of carers. That work will be evaluated and best practice identified to help drive improvement in the management of long-term conditions such as CRPS in every local area.

I thank my hon. Friend once more for securing today’s debate. I very much hope that our discussion has been helpful to him and to his constituent. I am more than happy to discuss further how we can improve outcomes for people suffering from such a pernicious condition.

Question put and agreed to.