Chamber and committees

Scottish Government submission of 18 August 2021

PE1886/A - Establish a specialist paediatric liver centre in Scotland

The Scottish Government is committed to making sure all people living with any liver condition in Scotland are able to access the best possible care and support, and benefit from healthcare services that are safe, effective and put people at the centre of their care.

Liver transplantation is available for adults over the age of 16 in Scotland. Whilst there are currently a number of Paediatric Gastroenterologists in Scotland who can provide initial clinical assessment and baseline diagnostics for children presenting with paediatric liver disease, there is at present no specific highly specialised service nor is there the clinical expertise to deliver either paediatric liver transplantation or complex paediatric hepato-biliary surgery within Scotland, due to the specialist training required.

There are currently no plans to have a paediatric specialist transplant service in Scotland for livers. Patients from NHS Scotland currently have access to three Highly Specialised Paediatric Liver Services which are commissioned by NHS England on our behalf. The three centres are located in Kings College Hospital, London, St. James’s University Hospital in Leeds and Birmingham Children’s Hospital.

Paediatric transplant centres do however provide outreach clinics, and transition their patients to adult services when they are judged to be ready. It is important to highlight that in some cases the original place of treatment may prefer to continue following up with their patients in their own centres, however this will be based on the individual clinical need of the patient.

Patients from Scotland are normally referred by either Consultants in General Paediatrics, Paediatric Intensive Care, Neonatology or Paediatric Gastroenterology located in one of the regional children’s hospitals in Edinburgh, Glasgow, Aberdeen or Dundee. Following agreement of need, the consultants will either contact NHS Scotland’s National Services Division (NSD) to seek funding authorisation (copying in the Out of Area Team in the NHS Board of residence), or will contact Out of Area Team who can submit the funding application to NSD on their behalf.

Acceptance to the services in England is based on the criteria prescribed by the Royal College of Paediatrics and Child Health in their document “Referral list for supra-regional paediatric liver services”, which is referenced in the NHS England Service Specification for Paediatric Liver Services.

The provision of general paediatric gastroenterology services (including hepatology and paediatric surgery) in Scotland is the responsibility of the local NHS Boards who will either deliver these services locally, or will do so via one of the specialist paediatric hospitals in Scotland.

Many of the basic investigations required to confirm the diagnosis and ongoing monitoring of paediatric liver disease are available within Scotland. In line with evidenced best practice, though, children can be referred as clinically appropriate to one of the three English centres which have the full resources available to them in terms of clinical expertise, critical care, diagnostics and therapeutics available to manage the needs of this group of patients.

The English centres are commissioned to investigate and manage all forms of medical and surgical liver disease including metabolic liver disease, acute liver failure and pre and post liver transplant management. The majority of the new referrals they receive are infants or young children with neo-natal or childhood liver disease. The services require specialist laboratory diagnostics, diagnostic and therapeutic endoscopy, diagnostic and interventional radiology as well as specialist surgical expertise to carry out specific procedures necessary to manage the complexity of disease presentation and ongoing care.

There is the expectation that any referral to England is made by either a Scottish Secondary or Tertiary Care Consultant and following investigation or treatment that where appropriate children will be discharged back to their regional specialist in Scotland for ongoing monitoring and shared care.

The responsibility for the reimbursement of travel and subsistence for children and their families is the responsibility of the NHS Board where the child resides. The family will often be offered accommodation close to the hospital in a facility such as that offered by Ronald McDonald House.

NHS Scotland’s National Services Division (NSD) work on an ongoing basis to monitor and highlight any potential services that could be provided in Scotland. Some highly specialist services, due to the low volume of patients requiring treatment, will need to be provided on a centre of excellence basis to maintain high quality clinical expertise.

Based on available data for the last five years, NSD have funded an average of five children per year to be assessed and/or treated by the specialist paediatric liver services in England each year. Such a level of need would not be consistent with ensuring the case volumes seen/treated in Scotland would be adequate to sustain a safe, fully staffed, highly specialised service.

At the present time NSD have no plans to make alterations to the treatment pathway which allows for children to access the Highly Specialised care and expertise which they require from the three providers commissioned on their behalf by NHS England. With such providers clinicians, patients and families can be assured that the services are of a high quality, have the required expertise and equipment, appropriate case volumes and are clinically safe.