Sunday 13 December 2015

Suspension (and re-opening) of the LUTS (Lower Urinary Tract Symptoms) clinic.

As the Chair of Islington’s Health and Care Scrutiny Committee, and Vice-Chair of the North Central London Joint Overview Health Scrutiny Committee - JOHSC (which covers Barnet, Enfield, Haringey, Camden and Islington), I first became aware in early November of patient concerns about the possibility of closure/decommissioning of a specialist LUTS clinic, which is run by Professor James Malone-Lee from a medical centre in Hornsey, and commissioned by Whittington Health.  Anxious patients asked to attend the December meeting of the JOHSC to make a deputation to the committee to express their concerns.  It seems that professor Malone-Lee has been using a regime of prescribing higher strength, longer-term antibiotic treatments than is usually considered acceptable under NICE prescribing guidelines to treat the patients' symptoms. The key point in all this is that the patients have all tried many times (and failed) to get their symptoms cured under more conventional treatment regimes, and had been referred to Professor Malone-Lee’s clinic as a last resort. Many of the patients report that this regime has worked for them where all others had failed.

We were in the process of organising to take the deputation when I received a phone call from Simon Pleydell, Chief Executive of the Whittington, telling me that they had taken an urgent decision to suspend the clinic following two episodes of related patient harm.  The Whittington said they would be making alternative arrangements for patients, but this didn’t seem to transpire.

As soon as the announcement was made, I started receiving long, anxious emails from patients, all of whom wanted to talk quite candidly, and in some detail, about their symptoms, and to relate how the professor’s treatment had been the difference between a life of almost unbearable discomfort, and a semblance of normality.  I personally received over 50 emails from patients of the clinic, all surprisingly detailed, and with a very similar story, and ending with the distress and anxiety they were all suffering at the prospect of not having their prescriptions renewed, and a return to their suffering.

What followed was a combination of intense lobbying of the Whittington, and myself, and also Cllr Alison Kelly (Camden) Chair of the JOHSC.and Cllr Pippa Connor (Haringey) vice chair, by a very determined group of patients.  I had a number of conversations with the Whittington during which I suggested that, given the patients’ clear understanding of the risks of the treatment, and that they considered this risk worth taking, that the clinic should be re-opened on the basis of an agreement with patients about the risks, perhaps some kind of disclaimer similar to that used with cancer patients.

The Whittington then held a meeting with patients, whilst at the same time a group of patients took the issue of the closure to court.  The Whittington seemed generally chastened and surprised by the strength of feeling, and the loyalty of patients to the clinic.  Shortly afterwards, an agreement was reached with Prof Malone-Lee to a lesser restriction on his prescribing and for a full independent review of the clinic and it’s practices to be carried out, following which the clinic was re-opened.

About a week later the JOHSC took the deputation, and after about an hour’s debate, we arrived at a series of recommendations to ensure that the independent review of the clinic is properly carried out, and that patients would be protected meanwhile.  The recommendations, as agreed by the committee are as follows:

Recommendations:
1.    That the Committee be minded to consider any proposal to decommission the LUTS Clinic by local CCGs as a substantial variation to services and that the issue be referred to the Secretary of State should such a proposal proceed without comprehensive consultation on the grounds of failure to consult.  

2.     That the committee be given the terms of reference for the external review of the LUTS clinic, that the terms of reference of the review should include the Whittington’s actions leading up to the suspension of the service,  and that the results and recommendations of the review be presented to a future meeting of the committee prior to any further decisions being taken to decommission. 

3.     That the Committee be updated with the Strategic Risk Register from Whittington Hospital and that the communications and engagements strategies and responsive action plans are shared with the Committee, to satisfy the committee that appropriate arrangements are in place should similar circumstances occur in respect of any future urgent actions by the Whittington.

4.     “That letters be sent to both Haringey and Islington CCGs requesting confirmation that they will not be proceeding with their proposed decommissioning of the LUTS Clinic pending the outcome of the Independent Review.” 

Actions:
In relation to the level of treatment and the prescriptions that were carried out at LUTs Clinic, Councillor Pippa Connor, requested that the Committee receive an update on whether any medical studies or reviews were undertaken by UCL about the treatment provided to patients.


I appreciate this is a very abbreviated version of events, which excludes a number of details.  However, I think the most important issue is to get the committee’s recommendations published as soon as possible, since with regard to protecting patients’ health, the recommendations are aimed at protecting them in the short-term as well as the long-term, and I want patients to have the recommendations to hand, should discussions arise with either the Whittington, Prof Malone-Lee or UCLH, with whom the Prof carries out his research.