Agenda item

West Midlands Cystic Fibrosis Services

[To receive a report in relation to Cystic Fibrosis services]


The Chair welcomed Kieran Caldwell – Head of Service and Supplier Management (NHS England), Sarah Freeman – Service Specialist (NHS England) and Dominic Kavanagh from the Cystic Fibrosis Trust.


Mr Caldwell stated that the services relating to cystic fibrosis were highly specialised and that it was deemed sensible to try and centralise expertise across the West Midlands. 


Mr Caldwell explained that Cystic Fibrosis services in the West Midlands were commissioned by NHS England’s specialised commissioning team. There were 487 patients currently in adult care and 392 patients in paediatric care across the West Midlands, including those that did not yet need inpatient care.


Commissioners had identified a growing demand for services and the need for another Cystic Fibrosis (CF) inpatient unit in the West Midlands. This led to work being undertaken with the Royal Wolverhampton Hospitals NHS Trust (RWT) which opened a new, specially designed outpatient unit in April 2016 (Heart of England Foundation Trust (HEFT)). However, the Trust was unable to develop the facilities required for an inpatient service in Wolverhampton.


It was stated that there would be some capacity at the University Hospital North Midlands and that outpatient care was being negotiated for Wolverhampton with additional capacity in Leicester and Nottingham whilst work was being undertaken at the Heart of England facility.


Dominic Kavanagh from the Cystic Fibrosis Trust stated that he attended the Heart of England facility following a double lung transplant. Mr Kavanagh stated that members of the Trust had been consulted and he had been involved in a peer review of other cystic fibrosis services which had provided him with a good understanding of what good care was. Mr Kavanagh stated that people with cystic fibrosis were generally very aware of what was required to maintain good health and were often not adverse to travelling longer distances to receive the required levels of care.


Impatient care was currently provided at the Royal Stoke Hospital and the model used was similar to what was wanted for Wolverhampton with all but 2 patients moving to this model.


The aim was to continue to expand services at the Heart of England Foundation Trust and Royal Stoke but it was also realised that an additional centre was needed and that expressions of interest were being sought from existing respiratory centres. 


Mr Caldwell agreed that resources would always be a concern but that there had been a good response from the hospitals regarding bringing a plan together. This plan included the development of existing wards at Heartlands to create wards with a negative air pressure and the use of more outpatient treatment and individual clinic rooms.


A question was raised regarding what steps were taken to ease the transfer of children into the adult services which could be traumatic if not handled correctly. It was stated that this was a familiar process and that there were transition clinics for those due to transfer in the next 6 months and visits were made to the Birmingham Children’s Hospital to help identify any future Wolverhampton patients.


The query was raised as to whether cystic fibrosis was tested for automatically and it was confirmed that for the last 5 years all new babies were tested soon after birth.


The Panel thanked Mr Caldwell, Mrs Freeman and Mr Kavanagh for their presentation.

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