Desperate Need: LUTS Service is run at Hornsey Central Health Centre. Photograph: Julian Osley.

Parents of at least nine children in need of treatment for urinary tract infections (UTIs) have been left in “desperate” need of care due to a specialist service’s inability to accommodate them.

Whittington Health NHS Trust’s Lower Urinary Tract Symptom (LUTS) service was shut down following a review in 2015, sparked when a patient suffered long-term organ damage following an apparent over-prescription of antibiotics.

The LUTS service, the only one of its kind in the country, started receiving referrals again in April 2018, but waiting times for new cases now stretch to February 2020, and there remains no access to treatment for children.

Kate Dwyer said, speaking on behalf of the LUTS patient group, said: “We’re contacted by an average of two parents a month, desperate for treatment for their children. We’re not seeking these children out, they are finding us.

“The LUTS clinic is their only hope of a cure. This specialist centre is the only one of its type in the country. The CCG [clinical commissioning group] and the Trust have taken away the LUTS treatment from the most vulnerable patient group without providing an equivalent care pathway.”

It is understood that the parents of three more children have come to the LUTS patient group seeking access to treatment since August.

Dwyer went on to blame the lack of provision for young patients on restrictions imposed by Whittington Health on clinicians requiring paediatric oversight of LUTS treatment, claiming that there is in fact no paediatrician with this expertise.

The LUTS patient group also criticised the apparent breakdown of efforts for children waiting for access to be seen at Great Ormond Street Hospital (GOSH), claiming that only four of the nine patients had so far had their details passed on.

GOSH clinicians were also said to disagree with the treatment strategy followed at the LUTS clinic, and were quoted as being unwilling to practise iit. None of the children concerned have so far been been for treatment at GOSH.

LUTS patient group representative Dr Kate Middleton said: “We have grave concerns for what will happen if the Trust continue to insist the limitations on new referrals are maintained.

“We continue to experience an atmosphere of poor communication and mistrust. We understand the challenges that surround this whole situation, but it does feel like the various parties have abdicated responsibility.

“We need some kind of collaboration, because at the end of the day, these are children who were having effective treatment and now aren’t. It’s just ethically desperate.”

According to Whittington Health, the Royal College of Physicians has recommended that the restrictions on paediatric treatment at the LUTS clinics remain in place, and that patients needing treatment in North Central London should seek care at GOSH.

Jennie Williams, Director of Nursing and Quality for Haringey and Islington CCGs, said: “We’ve been working very hard to try to find a solution for the children who are aligned to the patient LUTS group.

“The length of wait for a first appointment at the LUTS clinic is unacceptably long, we all agree that. `We asked on 12 November to ask exactly what is happening to address this matter. The Trust is working hard, and we are holding them to account to reduce those waits.

“We’re trying to support that small group of children whose parents told us in the summer that they had been receiving care from the LUTS clinic, and had now, in their own words, fallen through the gap. We have negotiated an arrangement with GOSH so that these children can be seen swiftly.

“We hope these children go and see the GOSH team and accept the treatment plan put to them, but we are hearing from the families that they feel that the pathway is not fit for practice.

“If they have been through this process at GOSH and are still unhappy with x being the diagnosis and y being the treatment, then we are in the position to try and offer these families a potential referral to a ‘super-specialist’ opinion.”

Williams said that the CCG was in conversation on the matter with the medical director of NHS England.

Cllr Alison Kelly (Lab, Haverstock) chaired the 30 November meeting of the North Central London joint health overview and scrutiny committee at which the LUTS patient group voiced their concerns.

On hearing both sides of the deputation on the matter, Cllr Kelly said: “It must be very stressful for all the parents, and we thank the clinicians, purchasers and providers for all their hard work.

“I’m going to make a suggestion. We do feel listening to you that there has been some progress in relation to adults, and the issue is about the pathway for children. We cannot recommend treatments, that is not our role, however much we want to do that. That has to be left to the clinicians.

“We want to advance this quickly. What is clear to all of us is that these are clinical decisions, and they need to be taken at the very, very top of the NHS, egged on by us. If we can take it right to the top, we can’t do more than that.”