Cystitis

Are you a patient at Prof Malone-Lee LUTS clinic ?

2 August, 2016

 

COB are pleased to support the OBBI group by loading this template onto our web-site. We would be grateful if you cut and paste the letter below then add your own personal details and send to your local MP to continue raising awareness and support for the issues raised.

Thank you.

Template as follows:- 

Dear (MP)

 

Threat to Lower Urinary Tract Services clinic, Whittington Hospital NHS Trust

 

As one of your constituents, I have recently written to you about the closure of the Lower Urinary Tract Symptoms clinic at the Whittington Hospital, London.  The clinic is currently run by Professor Malone-Lee whose innovative diagnostic and treatment methods have enabled thousands of people to live normal lives despite suffering from a chronic urinary tract infection with its debilitating symptoms. I am currently a patient and am responding well to treatment, after having had years of suffering before I was fortunate enough to be treated by the Professor and his team.

 The professor announced his retirement 2 years ago, since when the Trust have done nothing to ensure a succession plan.  The Professor is due to retire on 22 September and, despite many assurances, the Trust has not implemented any succession planning to enable the continuation of the work of this clinic.  As far as we, his patients are concerned, when the Professor retires, there is no named person taking responsibility for our continuing treatment at the clinic.  There are currently restrictions on the clinic accepting any new NHS patients and there are also restrictions on the treatment of paediatric patients.  We have recently discovered that patients are being given appointments for after 22 September but we have no idea whether the restrictions will be lifted, whether the treatment regimes we are on will continue or who will be treating us. The Trust has not seen fit to contact any of its patients to advise what is happening and as these patients are very vulnerable due to the nature of their condition, it is causing considerable anxiety and stress.

 At a meeting in May, the Royal College of Physicians (RCP), questioned why the Whittington had not planned ahead adequately to find a suitable replacement upon his retirement.  The RCP are fully aware that any succession team would need to be suitably qualified to carry on the specialist protocols used in the clinic.  Their interim report stated that the clinic should continue as the patients are a specialised group who cannot satisfactorily be treated anywhere else. You may also be interested to know that the annual cost of treating a patient using treatment protocols at this clinic is very much lower than other urology departments who follow standard procedures – these include painful invasive procedures, in-patient treatment and the use of medications which have severe side effects and unsuccessful outcomes for patients. On an annual cost basis, this amounts to around £5,000 as opposed to just over £400. Professor Malone-Lee calls this ‘the betrayal of the cystitis sufferer’ as it leaves hundreds of thousands of people undiagnosed and untreated, having to live their lives in constant pain and anxiety.

 The only advocates of the Professor’s methods, who are adequately trained Consultant grade physicians capable of taking over, are currently tied-down in other contracts for another 1-2 years. They are primarily unavailable because of the Whittington deliberately failing to plan for any succession. The Professor has advised the Trust he is willing to extend his NHS retirement date by up to 2 years to ensure the continuity of the Clinic and oversee his successor as and when they become available to take the post.  However, the Whittington has not made any commitment and despite verbal assurances to the Professor they agree with this plan, they have failed to confirm this in writing.

 The only evidence we have that the Clinic will not close on 22nd September, is that the Whittington has recently requested that the Professor's team continue making NHS patient appointments beyond the 22nd September - but still with no knowledge of who will be heading the Clinic, as they have not yet formally re-employed the Professor.   Needless to say, this is making chronically ill patients more anxious.

 The Professor has now asked us, his patients, to help by contacting our MPs  and other interested parties. He is very concerned about his patients’ welfare and has advised the Trust that he will only be prepared to stay on if the clinic opens to new NHS admissions and the restrictions on paediatrics are sorted out.  He points out that it will not be possible to attract high calibre medical professionals if no new NHS patients are permitted to attend.  It would also be discriminatory practice to exclude new NHS patients from this innovative, proven treatment.

 I would be very grateful if you could write as a matter of urgency to Dr Richard Jennings, Medical Director at the Whittington Hospital NHS Trust asking what is happening regarding this succession planning issue. ie, who is going to take over running the clinic at consultant level and what is happening about the current restrictions on accepting new NHS adult patients and finally what is being planned for paediatric patients?

 On another final point, Professor Malone-Lee spoke to MPs at Westminster on 6 July concerning current protocols for Urinary Tract Testing and their failing and those who were present are planning an adjournment debate in the autumn.  I would be grateful if you could support this cross-party debate.  Catherine West, MP is co-ordinating the debate and would be delighted to receive your support.  I will be in contact with you later in the summer with a further note summarising points from this presentation as this is a wider long term issue affecting one in three women over their lifetime and increasingly children and men.

 

I would very much like to come to one of your surgeries to discuss this letter and the succession planning for the LUTS clinic further. Perhaps you could get back to me with an appointment?

 

I look forward to hearing from you.

 

Yours sincerely

 

 

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