A representative from UHL will attend the meeting to present their initial view on proposals from NHS England.
Mark Wightman, Director of Communications, University Hospital of Leicester NHS Trust (UHL) attended the meeting to present UHL’s initial view on proposals from NHS England. He introduced Aidan Bolger, Paediatric Cardiologist and Head of Service for East Midlands Childrens’ Heart Centre (EMCHC) and Claire Westrope, Consultant in Paediatric Intensive Care and Clinical Lead for Paediatric Intensive Care Unit who could provide clinical responses if required.
UHL were grateful for the support of the Joint Committee and the opportunity to provide evidence to enable the Joint Committee to make a qualified and evidence based decision. UHL had always maintained that if the EMCHC had given them cause for concern or was not providing its patients with excellent outcomes they would have a different viewpoint on the proposals. However, they felt that the proposed changes were not right for their patients.
UHL’s initial views on the proposals included the following:-
a) The proposal to conduct the consultation process on a national basis was of concern to UHL as the local perspective could become diluted since other areas of the country were unlikely to comment upon the proposals because they would not have any particular interest in the issues affecting the East Midlands. There was a concern that NHS England would use the national consultation to suggest that both the Glenfield and the Royal Brompton Hospitals should cease to provide Level 1 CHD services because there would be no overwhelming support in the national consultation to support them continuing.
b) The proposals also raised concerns relating to the knock on effect upon other services such as ECMO and paediatric intensive care services in the East Midlands. There was also concern that NHS England had subsequently announced they were fast tracking two national reviews on ECMO and Paediatric PICU provision to inform the review of CHD services. There was a strong view that these reviews should have undertaken before the CHD proposals were announced and not as an apparent afterthought.
c) UHL felt they had now reassured NHS England on the colocation of all services in one building and had explained the plans in place to move to 24/7 access to services. UHL were confident that they could give the necessary assurances to NHS England on this.
d) The remaining issue for UHL was the arbitrary figure of 125 operations per surgeon per year. The advisor to NHS England had never indicated a minimum or maximum number of operations and NHS England had determined the number of 125 operations per surgeon.
e) If all patients in the East Midlands area were treated at Glenfield, then the 500 operations per year could be achieved. There were currently 502 cases in the East Midlands but a number were treated out of the area. NHS England promoted ‘patient choice’ as being enshrined in the NHS constitution but, in reality, it was the referring clinician that was leading the ‘patient choice’ to go to other centres. It was felt that NHS England could provide stronger leadership in requiring centres in the East Midlands to refer patients to Glenfield in the first instance, unless there were compelling reasons for not doing so.
Following questions from Members the representatives from UHL stated:-
a) That ‘patient choice’ was effectively driven by longstanding established clinician networks based upon personal relationships. It was felt that with the various reorganisations in the NHS over recent years these relationships should be reviewed to see if they were still appropriate and relevant.
b) Patients from Northamptonshire, Cambridgeshire and East Norfolk were referred elsewhere for treatment and when this was raised with NHS England their response ad been that this was patient choice being exercised. UHL felt that patients were not being made aware of Glenfield as a specialist centre when being referred elsewhere.
c) The number of patients diagnosed with CHD before birth was increasing and this also determined where patients were treated. For example, patients in Peterborough had historically been referred to London for treatment and patient choice is not discussed in these clinics.
d) UHL would refer patients to other centres if it was felt that better services or treatment were available at that centre, or if the patient felt they had previously had a bad experience at Glenfield, or if being treated at Glenfield would result in a delay in them receiving treatment. UHL had raised the issue of other centres in the East Midlands referring patients elsewhere and had generally received unsupportive replies and an unwillingness to discuss the issue further.
e) UHL had raised the factual inaccuracies in NHS England’s assessment of CHD services at Glenfield during their visit to Leicester on 16 September 2016 and these had been accepted by NHS England. UHL had subsequently written to NHS England requesting that their assessment should be amended in view of these inaccuracies. UHL felt that their initial assessment of meeting 8 out of the 14 core standards should rise to 10 or 11 out of the 14 core standards. The highest score in the original assessments of all centres had been 12 out of 14 and the lowest had been 6 out of 14. It appeared that colocation of services and performing 500 operations per year outweighed the other standards in NHS England’s assessment process. UHL would be raising these inconsistencies within the assessments with NHS England.
f) UHL was currently on target to achieve the 125 operations per surgeon with 3 surgeons. If they moved to 4 surgeons now this would undermine their case to continue to provide Level 1 CHD services as they would not achieve this benchmark; unless more cases were referred to UHL from the East Midlands area instead of being referred elsewhere. In addition, recruitment had also been affected by NHS England’s announcement of the proposals, which had cast a shadow of uncertainty over the future provision of CHD services at Glenfield and this would not encourage prospective applicants to want to work in the unit.
g) UHL had originally suggested a two site East Midlands’ network centre solution, with treatment being shared between Leicester and Birmingham, in response to the previous safe and sustainability review proposals. This had been suggested again to NHS England in the preliminary stages of this current review, but had not received any favourable support.
h) UHL had obstetricians working at Kettering Hospital and the arrangement worked well. The same offer had been made to Northampton Hospital and had been rebuffed.
i) UHL were working closely with both Liz Kendal MP and Nicky Morgan MP who were both supporting UHL’s position.
j) Pregnant women diagnosed with foetal heart conditions would not be treated by their GP’s but by obstetricians in hospitals. The recognised pathways for treatment for these cases were Oxford and London.
Members asked for the following to be supplied to them:-
a) Evidence of why patients chose to receive treatment at other centres and why patients chose to have treatment at Glenfield.
b) A copy of UHL’s plan to demonstrate that it will meet the standards in the required timescale.
c) A copy of UHL’s response to NHS England following the visit to Leicester on 16 September 2016.
d) A copy of the upgraded assessment of Glenfield CHD services when this had been received from NHS England.
UHL’s agreed to share the documents requested.
The Chair invited members of the public to make comments and observations:-
Eric Charlesworth, Leicester Mercury Patient’s Panel made the following comments:-
· He thanked the Councils for arranging the meeting and for the opportunity for the public to make their views known.
· He noted that NHS England had agreed to attend a meeting with Rutland County Council on 31 January 2017.
· He felt NHS England had failed to comply with a number of recommendations made by the Independent Reconfiguration Panel, following their review of the Safe and Sustainability Reviews proposals in 2012, in this current review.
· There was concern that the proposals could mean the loss of the ECMO unit and this provided a valuable health asset for both adults and children living in the East Midlands.
· Councillors should raise the implications of the NHS England’s proposals in their own localities and wards at every opportunity.
Shirley Barnes – a parent of a child with congenital heart condition stated that if Glenfield lost its Level 1 services, there would not be a specialist centre on the eastern side of the country between Newcastle and London. The East Midlands would be the only region in the country without a specialist heart centre. Patients could only travel to Birmingham Children’s Hospital if there were beds available, otherwise patients in the East Midlands would have to travel long distances to other centres for treatment such as Liverpool, Newcastle, Southampton or London. It was felt the additional travelling time to Birmingham would be dangerous in instances where emergency treatment was required, particularly as there were regular occurrences of traffic congestion on the on the M6 motorway to Birmingham.
Mrs Barnes was organising a petition at Glenfield Hospital to support the on-line petition at https://petition.parliament.uk/petitions/160455. The paper petition was being signed by the elderly and those that did not access to the internet. It was important to spread the awareness of the review as widely as possible as it affected every child in the country.
Members made the following suggestions:-
a) UHL should make all GP’s in the East Midlands aware of the services offered by the EMCHC at Glenfield as it appeared that they were unware of its existence, especially in Northampton and Cambridgeshire.
b) The current petition had received 33,000 signatures and more publicity on the issue was needed to get this figure to over 100,000 so that it triggered a parliamentary debate.
c) Engagement should take place with all the MPs in the East Midlands area and for the new proposed parliamentary constituencies which went further south than at present.
d) UHL should continue to make approaches to Northampton Hospital on the issue of referrals.
e) The letter to NHS England agreed in the previous item should also be copied to the Secretary of State for Health.
The Chair thanked everyone for their participation in and effective discussion which had raised a number of points to be included in the letter to NHS England. It was important to put these views to NHS England now rather than wait for the formal consultation to start.
It was also important to use the period before the start of the consultation process to engage with other authorities and organisations and undertake further research of the issues, including the practicalities of patient choice.
As soon as the date of the formal consultation was known there would be a minimum of two further meetings. There would be a meeting with NHS England and one involving interested parties including parents, carer groups, young people, and representatives of the wider public to put forward their views.
1) That the Chair and Vice Chair prepare the letter to be sent to NHS England and circulate it to members of the Joint Committee for comment and approval before it is sent to NHS England and copied to the Secretary of State.
2) That UHL provide copies of the documents requested earlier in the meeting.
3) That further details be provided to the Committee as to why the two site East Midlands’ network centre was rejected by NHS England.