Professor James Malone-Lee

• THE lower urinary tract symptoms (LUTS) clinic patient group at Whittington Hospital welcomes the reopening of the clinic to new NHS patients following its closure in October 2015, (Bladder clinic waiting list leaves patients ‘distraught’, May 18).

But these 240 patients and all new future NHS patients are now faced with having to seek a secondary referral for what is essentially a letter-writing exercise at a cost to the NHS of around £60-£100 per appointment.

We are already aware of someone who has been refused a secondary referral letter from her urologist. She is now faced with having to challenge the hospital, with the assistance of her GP and local MP.

This specified secondary referral process means that patients already discharged from secondary care because consultants can offer no appropriate treatment will have to go through the referral process via their GP again.

This is against a background of someone struggling with a chronic infection who is often unable to work, in considerable pain and facing the risk of possible kidney damage or urinary sepsis.

As this service is not within the specialist commissioning system (that is, funded via NHS England) and as Professor James Malone-Lee will have provided a referral criteria for patients, the LUTS patient group feels that as long as these referral criteria are met, then the route of referral should be through either the GP or secondary consultant, not purely through the secondary route.

This preserves patient choice and allows GPs to keep control of the system, including payments, and avoids additional costs and more distress to the patient. GPs also provide continuity of care and are best placed to refer directly to the clinic, as was previously the process.

The wait for an NHS secondary referral countrywide is up to 21 weeks. The clinic has made it clear there is capacity for more patients to be offered appointments to reduce the considerable waiting list.

There are approximately 240 patients waiting on the “closed” NHS referral list for an appointment. This is on top of the 400-plus who have sought treatment with the professor in a private capacity since the clinic was closed in 2015.

These private patients are also now forced to go through this NHS secondary referral route on top of the significant financial hardship they have already incurred in seeking treatment for chronic infections.

Children still have nowhere to go for treatment following the closure in 2015 to new paediatric patients, which remains in place despite reopening to adult patients.

The professor has treated children for more than 30 years. Children he has treated are refer­red by Great Ormond Street and other leading paediatric centres.

The Chronic Urinary Tract Infection Campaign (CUTIC) recently undertook a Freedom of Information exercise requesting figures for patients visiting A&E for UTI, admittance to hospital due to UTI and admittance to hospital due to urinary sepsis between 2012 and 2016.

During 2015-2016, when the paediatric restrictions were imposed on the LUTS clinic, these paediatric figures increased by 27 per cent, 53 per cent and 76 per cent respectively at the Whittington.

In 2018, a 10-year patient study published by the clinic showed that in a cohort of more than 600 women, 64 per cent felt better on treatment, with a further 20 per cent very much better.

This NHS clinic is the only one in the UK providing ongoing clinical research into how chronic UTI evolves, treatment and management of these infections and the advancement of future in-bladder treatments away from the usage of oral antibiotics.

Without this clinic, these new treatments will not be able to undergo patient trials and launch into the NHS market for wider use.

The LUTS patient group has yet to receive, despite four requests, a date for a meeting with the hospital executive and local CCGs. We would ask that they now invite the LUTS patient group for further discussion as soon as possible.

SUSAN YATES
On behalf of the LUTS patient group