Development of a modern adult cystic fibrosis centre in Manchester

History and politics

In 1982, a small adult cystic fibrosis (CF) unit was initiated by a respiratory physician (AKW) and a paediatric CF-trained physiotherapist in the physiotherapy department at Monsall Hospital. Monsall Hospital was an old-style fever hospital based in the North District of Manchester. There was a need for a regional adult CF unit as about 30 CF adults were still under the care of the two specialist paediatric CF centres.

The newly-forged adult CF unit prospered. The unit received large numbers of referrals from the paediatricians and GPs in the North West Region. The Regional Health Authority provided funding for expensive drugs and some crucial posts such as physiotherapists, social workers and dieticians. In 1986, the Cystic Fibrosis Trust provided funding for a clinical fellow to assist with clinical support and also to undertake clinical research. Patients and families began to raise funds for equipment and facilities to improve patients' hospital stay. As the patient numbers outgrew the limited facilities, a ward with 10 cubicles was established in 1990.

In 1990, the minister for health initiated the provider/purchaser interface whereby the NHS health authority covering the area in which a patient resided was cost accountable for services provided by hospitals to that patient, wherever that might be (this health authority responsibility has now been modified to be the primary care trust to which the patient's GP ‘belongs’). A research grant provided by the Cystic Fibrosis Trust was used to undertake an accurate costing by an economist from York University of the regional adult CF service to the North West Region.¹ CF adult patients were categorized by cost according to four bands of disease severity. At a later date, a fifth band for very costly patients on continuous intravenous antibiotics was added ( Table 1). These bandings and attributable costs were accepted by the purchasers of the service. As a result, the adult CF unit, by bringing an income to the hospital immediately became an asset rather than a financial millstone.

Table 1.

Annual costs for bands of grades of disease severity (2009)

Band	Cost (£)
1	1573
2	13,500
3	22,000
4	34,500
5	82,500

In 1992, through the Cystic Fibrosis Trust, a foreign benefactor provided a substantial sum to the Unit to build a dedicated CF building for adults with CF in the North West Region. It seemed reasonable for the dedicated building to be established in a hospital in South Manchester where the main regional respiratory services were established including lung transplantation. The move was opposed by the North Manchester District, probably because of the defined income which they received for care provided by the adult CF unit to the region rather than consideration of the medical benefit which the CF adults would receive by their care being relocated to South Manchester. A prolonged bitter conflict was only resolved by the CF adults saying they would go wherever the unit went.²

In 1993, the CF Unit went to South Manchester and was housed on a temporary ward until the new building was completed in 1994.

A purpose-built adult CF unit

The new build for adults with CF was the first of its kind in the United Kingdom. On the first floor was located a dedicated ward only for CF patients. There were initially only 10 rooms, one of which was en-suite; a further en-suite room was added a few years later. There was a communal room with some cooking facilities for the patients to meet and mix. Awareness of the potentially lethal consequences of cross-infection with B. cenocepacia³ meant that CF adults infected with B. cepacia complex were excluded from the new CF ward and were admitted to the adjacent general respiratory wards. On the ground floor, there were offices for the all the CF staff, an exercise room and three outpatient rooms. As patient numbers increased, additional staff were recruited including a dedicated CF pharmacist and clinical psychologist.

Increasing patient numbers and cross-infection

The newly-relocated CF unit, with its own purpose-designed building, began to receive large numbers of referrals. Some CF adults were surviving into the fourth and fifth decade of life. CF was now a disease associated with adult survival rather than childhood death. Research showed the CF patients who received continuous care in paediatric and adult CF centres had a better outcome for pulmonary function and nutrition – the main prognostic indicators for survival.^4,5 However, as patients were growing older their disease was increasing in complexity and severity; survival was maintained by an increasing menu of therapeutic interventions such as nebulized antibiotics, mucolytics, nasal ventilation and aggressive nutritional supportive measures, all delivered by highly-experienced multidisciplinary teams (MDTs). Admissions to our unit increased to approximately 400 a year but by the year 2000 had reached a plateau because bed supply was limited and a long waiting list for inpatient care developed. Research on our unit also revealed that some strains of Pseudomonas aeruginosa were transmissible between patients and that Manchester had its own specific strain.⁶

Within less than 10 years of opening and by the year 2002, the new unit had become too small for the number of patients it was receiving and problems were emerging that it had not been designed to cope with, such as the cross-infection of transmissible pathogens (P. aeruginosa and MRSA) between patients. The possibility of trying to establish another adult CF centre in the North-West Region had been raised but had not received the necessary support.

Certain damage-limitation measures were undertaken to deal with the cross-infection issues and limit the increasing number of CF adults attending the unit. The communal room for the patients on the ward was closed and the patients were confined to their rooms and encouraged not to socialize.

The age of first referral at which patient could be seen on the unit was increased from 16 years to 18 years with patients who would previously have been transferred to the adult service being retained in the children's service. This was highly unpopular. Outpatient clinics were segregated into six different cohorts ( Table 2).

Table 2.

Outpatient clinics segregated into six cohorts based on dominant organism on sputum microbiology

Cohort	Dominant organism
1	Non-Pseudomonas aeruginosa
2	Methicillin-resistant Staphylococcus aureus (MRSA)
3	Pseudomonas aeruginosa – sporadic strains
4	Pseudomonas aeruginosa – transmissible strains
5	Burkholderia cepacia complex – sporadic strains
6	Burkholderia cepacia complex – transmissible strains

Planning another new unit: delays

By the year 2000, the CF Unit was caring for over 240 adults. No definition/evidence has been provided as to what should be the maximum number of patients looked after by an adult centre before quality is sacrificed to quantity. An increasing waiting list of sick patients needing but not getting admission to a dedicated CF ward and insufficient outpatient room availability, resulting in inefficient and overcrowded clinics, focused the need to plan and develop a new unit. The unit opened in 1994 as a state-of-the-art service was no longer fit for purpose after less than 10 years.

In 2000, a North West Cystic Fibrosis Working Group was formed by the North West Regional Specialised Commissioning Group in response to the emerging difficulties arising in the services for adults with cystic fibrosis. It was energetically chaired by one of the specialized commissioners for CF (RDS). The main purpose of the group was to evaluate the challenges to the service and assess the number of children with CF in the North West likely to reach adulthood over the next decade. The task of identifying the numbers of children proved extremely difficult. After much delay due to difficulties in obtaining details of the CF paediatric population in the North West, as not all children were known to the specialist services, the document entitled ‘Responding to Success’ was published in 2004. The main recommendations for options to meet the future demands for delivering quality care for adults with CF in the region were: (1) to expand the adult CF centres in Manchester and/or Liverpool; and (2) create a third adult CF centre in the north of the Region and expand the Liverpool and Manchester centres.

The document was accepted by the Primary Care Trusts (PCTs) in the North West and the North West Specialised Commissioning Group for CF services proposed to find capital funding for increasing the size of the existing adult CF Unit in South Manchester and explore the potential for developing a third adult CF Unit in the Region.

A scoping document was presented to the lead PCT for CF in 2003. A provisional business case was completed in 2004–2005. Plans were proceeding relatively smoothly until the then South Manchester University Hospitals Trust (SMUHT) achieved foundation trust status in 2005. At this point, the building of the new adult unit became the responsibility of the new University Hospital of South Manchester NHS Foundation Trust (UHSM). The newly-fledged Foundation Trust was risk-averse and there was a further 2 years of delay while an outline business case and then a full business case were developed and presented to the Trust's finance committee. The process was arduous, tedious, frustrating, anxiety-provoking and consumed a considerable amount of the clinical time of the two consultant physicians and consultant physiotherapist involved in the planning. Some middle managers were extremely supportive. It was gauged that a new adult CF unit would cost £8 million. Costs for building are far more expensive in the NHS than in the private sector. The funding for the construction of the new unit would be provided by a bank loan, which would be serviced by the income derived from the new patients referred to the unit and the patients already attending the unit. The foundation trust wished to take no financial risks. The potential income was based upon the banding costs charged to the PCTs for the patients attending the unit. The business case also included the increasing number of staff required to look after the large number of patients (approximately 500) potentially attending the unit by the year 2014. In addition, the foundation trust required/demanded the commissioners contribute more money into the scheme to make it financially viable. This was undertaken by the commissioners.

Delays: two external peer reviews

The finance committee continued to vacillate and stall for another year. The adult CF unit felt it could no longer provide a quality service to current patients and any new referrals. The two senior CF consultants proposed to the chief executive that the unit should not accept new referrals if the indecision persisted and the specialized commissioners for CF should be informed of these intentions.

An external independent peer review was commissioned by the chief executive to confirm the need for a new unit. This was undertaken by the senior consultant at the Leeds Adult CF Unit in April 2007. He made 21 recommendations; paramount among these was the comment ‘if urgent plans are not made to increase human resources and facilities at the Unit then patient outcome will suffer’. The Trust was also approached by the specialized commissioners who invoked ‘it was a no-brainer’ as to the urgency for the building of a new adult CF unit. By now there had been at least a two-year delay in starting the new build.

The Finance Committee decided to accept the business case for a new CF ward but unresolved was the funding of the integral offices and the outpatients.

In 2008 the CF unit was peer reviewed by the Cystic Fibrosis Trust. Although the unit was highly commended for its delivery of high quality care there were two significant criticisms: (1) the CF adults with B. cepacia complex infection could not be excluded yet again from a purpose-built CF ward and facilities should be developed for them within the new build; (2) the quality of the food was heavily criticized (justly) by the patients in a reply questionnaire to the Cystic Fibrosis Trust. The Foundation Trust agreed to fund two extra beds on the unit which would be isolated and nursed separately from the other patients, and a large kitchen was designed for incorporation within the unit which would be staffed by a rota of chefs.

In July 2008, the CF staff moved out of the ground floor accommodation into small temporary accommodation on the far side of the hospital. The CF outpatients clinic was moved to the cardiology outpatients on the far side of the hospital. The clinic times were fixed. We lost our flexibility. The ward remained on the first floor until downstairs was converted to the new ward space. At this point the CF unit which had been located on one site was now in three separate areas of the hospital for the next 12–18 months.

A further setback

Just after commencement of building of the new ward in 2008, a decision was made to reduce the cost of the build by £1 million and not build the offices for the doctors, secretaries, social workers and administrative staff. The consultants declared the building was not fit for purpose, the building work should stop and they refused to sign the contract agreeing to the building of the new unit.

A stand-off took place for two weeks between the clinical staff and trust managers. It was resolved by the Trust agreeing in principle to the construction of the office space and the office space was eventually completed.

New build completion

The new ward was completed and opened in September 2009. It has 22 beds with en-suite facilities and includes a large MDT room, three exercise/physiotherapy assessment rooms, a large kitchen and office accommodation for some of the MDT staff.

The large kitchen will be staffed with a rota of chefs to meet the special nutritional needs of the CF patients. On the first floor a large outpatient facility consisting of nine OPD rooms and offices for the CF specialist nurses was completed in December 2009. A separate suite of offices, adjacent to the outpatients has been completed and will accommodate the four consultants, the four social workers, the two psychologists, the administrative staff, secretaries and clinical research fellows.

The architects and builders became very attached to the patients and their families. A large number of them raised money for the CF unit by participating in the Manchester 10 km run in 2009.

It should be noted that it has become increasingly difficult to maintain the high level of communication required for the medical care of CF patients due to the large number of patients and the large number of staff. Currently there are 60 members of staff on the unit whereas there were only two at the very beginning of the unit commencement. This will require the development of new ways of communicating and, possibly, a change in organizational arrangements within the unit.

The business case is planned to cope with the care of new and current patients until 2014 when the unit will look after 500 patients. Further expansion is not an option as there is no more space on the hospital site. Currently, there is an urgent need for the establishment of a third adult CF centre, initially at least as a spoke of the UHSM service, and the specialized commissioners have requested expressions of interest from interested Trusts in the north of the Region.

Conclusion

Delivery of expert care to adults with CF requires a MDT, easy access and dedicated facilities. The provision of such facilities provides formidable challenges in terms of the increasingly limited finance within the NHS and the length of time to taken to make decisions by an often bureaucratic process for service development. Given the history of this latest development, which has taken 5 years from the clear identification and quantification of the future problem to its temporary resolution, we are not hopeful that the 2014 deadline for its ‘phase 2’ resolution will be achieved.

Footnotes

DECLARATIONS —

Competing interests None declared

Funding None

Ethical approval Not applicable

Guarantor AKW

Contributorship All authors contributed equally