Agenda item


To hear views from public, patients groups and other stakeholders on NHS England’s proposals for Congenital Heart Disease Services.


Leicester University were invited to attend the meeting.  Professor Philip Baker, Pro-Vice Chancellor and Head of College Medicine, Biological Sciences and Psychology is, however, unable to attend but has submitted a representation on behalf of the University.  A copy of the letter is attached.


The Chair stated that the Commission had previously invited members of the public, patients groups and other stakeholders to submit their views on NHS England’s proposals for Congenital Heart Disease Services.  A number of individuals and stakeholders had registered their interest to address the Committee and had submitted written submissions. 


Leicester University had been invited to attend the meeting and although Professor Philip Baker, Pro-Vice Chancellor and Head of College Medicine, Biological Sciences and Psychology was unable to attend, he had submitted a representation on behalf of the University.  A copy of the letter is attached at Appendix A to these minutes.


Lincolnshire Health Scrutiny Committee had submitted their response to NHS England’s Consultation on the Congenital Heart Disease Review and a copy of their submission is at Appendix B to these minutes.


The Chair stated that the primary purpose of people presenting their submission was for the Committee to hear at first hand the views being expressed and, as such there, would be no opportunity for members of the Committee to ask questions on the submissions.  Representatives of NHS England were present but they would not be asked to respond to the submissions. They would, however, consider the submissions as part of the consultation process. 


The Chair stated that each person would be given 5 minutes to present their submission and it would be published with the minutes of the meeting unless the person presenting the submission indicated they did not wish it to be made public.  The submissions could also be included as part of the Committee’s evidence to the Consultation process.  All those who were intending to make a presentation to the Committee were then asked to indicate if they wished their submission to remain private.  No such indications were received and the Chair confirmed that all the submissions would be published with the minutes of the meeting. 


The Chair then invited the following patients and stakeholders to address the Committee for a maximum period of 5 minutes each:-


a)         Shirley Barnes, a parent of child with a congenital heart disease.  A copy of the submission is attached as Appendix C to these minutes.


b)         Olivia Barnes, a parent of child with a congenital heart disease.  A copy of the submission is attached as Appendix D to these minutes.


c)         Jess Whitehouse, a parent of child with a congenital heart disease.  A copy of the submission is attached as Appendix E to these minutes.


d)         Dr Sally Ruane, Health Policy Research Unit, DeMonfort University.  A copy of the submission is attached as Appendix F to these minutes.


e)         Katy Weatley, Leicester Mercury Patient Panel.  A copy of the submission is attached as Appendix G to these minutes


f)          Karen Chouhan, Chair of Healthwatch Leicester, representing Healthwatch Leicestershire and Healthwatch Rutland.  A copy of the submission is attached as Appendix H to these minutes.


g)         Eric Charlesworth submitted a question, a copy of which is attached as Appendix I to these minutes.


            Mr Charlesworth commented that a number of questions previously asked at public meetings had not received a response from NHS England.  It was important that the public were given the answers or, if not, an explanations as to why the questions have not been answered.  He was also concerned that the PICU and ECMO review proposals were only made public on the previous Friday and he questioned how this could realistically be incorporated in the CHD Review at this stage, which was not in keeping with the previous IRP finding on this issue.


The Chair thanked everyone for their contributions and submissions, which provided a valuable insight to the effect of the proposals on patients.


The Chair then invited questions from the members of the Committee.  The following comments/statements and questions were received (these have been grouped into general themes for ease of reference). NHS England responded to some the comments/statements and questions and these are shown below each themed area.




a)         It was disappointing that NHS England had not responded to the questions asked by the public and patients at previous public meetings.  It was important that the members of the public were given an explanation why these questions had not been answered.  A Member had been unable to find NHS England’s Q&A on the website during the meeting which indicated the difficulties the public were having in accessing the information.  There was frustration that, in common with other NHS consultations on the STP and health care in general, it was impossible to receive forthright answers to questions asked during the process; which added to the concerns over openness and transparency.  It was felt important that NHS England should demonstrate at the forthcoming public meeting how to access this link and that show that the questions had been answered.  It was not reasonable to expect that patients and families who were already under stress should have to make tortuous searches to find the answers they were seeking.


b)         NHS England should publish its risk analysis to patients in areas where they were proposing to close a Level 1 centre, particularly in relation to the vulnerable groups already identified by NHS England.


c)         It was worrying that some centres were being allowed to continue as Level 1 centres based upon an assumption that they would achieve the 125 operations per surgeon simply by other Level 1 centres closing.  This was inequitable in relation to how UHL, in particular, were being treated and raised grounds for judicial review in relation to the process used for carrying out the review and the consultation, particularly the disparity of treatment between UHL and Newcastle, the poor travel modelling and the assertion that 125 operations per surgeon was an essential requirement to provide a safe and sustainable service in the future.  There were also concerns over questions relating to the transparency and conflicts of interest of some of those involved in the process of putting forward the proposals in the review who were working in Trusts that would benefit from the proposals.


d)         The uncertainty of the timeline for the review and the taking of the final decision was considered detrimental and damaging to the current provision of services as it created uncertainty and worry for those staff and their families working in the current centres put forward for closure.  It was also considered that it was unsettling for patients and families and caused additional anxiety at a time of extreme stress for them.  This uncertainty had already led to the early closure of Manchester Level 1 services.


e)         There was enough evidence already to indicate that the proposal to cease Level 1 services at UHL was not sustainable and that the proposal should be dropped now.  Services had previously been regionalised and the outcomes at Glenfield were excellent compared to other units.  It was the only centre between Newcastle and London on the eastern side of the country and if it closed it would disadvantage patients in the East Midlands for ever more.




g)         NHS England had still not put forward an EIA in relation to specific individual vulnerable groups, such as people of south Asian origin, and this was of particular concern as there were large numbers of this vulnerable group in the east midlands generally and in Leicester in particular.  The proposals did not make sense in proposing to close a Level 1 centre in Leicester when there was such a large identified vulnerable group in the region. 


h)         The personal accounts submitted to the meeting by parents and the patient panel had emphatically demonstrated families faced difficult situations over long periods of time and it was clear that the proposals would only add to these difficulties. 


i)          There were concerns at the previous meeting that if UHL did not provide Level 1 services they would not be able to provide Level 2 services.  NHS England had indicated that they would discuss the issue with UHL and they were asked if any progress had been made.


j)          It was still not clear why an excellent unit such as UHL with low mortality outcomes was being put forward for closure.   Given the predicted growth rates in the region, it was questioned how the larger centres would cope with the additional demand from the areas where centres were closed in addition to the increased demand from their own catchment areas, particularly when these large centres had been fairly static in terms of the number of operations for some years. It was also questioned how the larger centres would recruit the additional specialised staff required to meet the increased demands.  There were concerns that waiting times for operations in the larger centres could increase as a result of these proposals, particularly if they could not recruit sufficient numbers of staff, and this could also impact upon mortality rates.


k)         When the review started it was expected that the decision would be made by 30 November 2017 but there had been no indication when the decision would now be made as a result of suspending the consultation during the general election period.   It was also unknown who or which body would be involved in making the final decision, and this further added to concerns over transparency.


NHS England’s Response


Michael Wilson thanked Members for the invitation to attend the meeting and hear the contributions made by parents and stakeholders.  He stated that the prime purpose of NHS England’s attendance was to note the contributions to the meeting and to relay these back to NHS England.  


Although NHS England were not attending to specifically respond to comments made at the meeting it was felt helpful to make the following responses:-


a)         NHS England had received UHL’s growth plan and were considering it and a response would be sent to UHL.  This issue had now been passed to John Stewart, Acting Director of Specialised Commissioning NHS who was the new Programme Director for the CHD Review.


b)         NHS England aimed to respond to all FOI enquiries within the 20 day target but this was not always possible. 


c)         NHS England had updated the information on the Q&A area of the website to take into account questions raised during the consultation.  If anyone did not feel their question had been answered they should contact the Review Team and Mr Wilson would make sure that the question was answered.


d)         The NHS England Board would take the final decision in the light of the responses to the consultation responses.


e)         The concerns surrounding the 125 cases per surgeon were noted but NHS England believed they had set out the basis for the figure of 125 cases in the documentation when standards were agreed.  NHS England believed the figure to be a fair representation based upon the recommendations of surgeons working in this particular speciality and they also felt that they had provided an explanation of the evidence they had used.


f)          The EIA and Impact Assessment had been published as part of the review and consultation and it was unclear to them what was meant by the comments that they had not been published.  It would be helpful if the specific details could be made known to NHS England after the meeting.


g)         The frustrations about straight answers to questions were understood and NHS England needed to make sure that the link to the Q&As was more easily accessible.  NHS England intended to answer the questions asked even though the answers may not always be what the questioner wanted to hear.


h)         The NHS Board, in making the final decision, would need to consider whether the proposals were appropriate and whether any changes outweighed the cost of those changes, including the question of having no Level I services within the East Midlands in the future.


i)          It was expected that those centres taking on increased workloads as a result of the proposals would need more staff. NHS England would want to work with staff in Level 1 centres that would close to have the opportunity to transfer to another Level 1 centre that would have additional workloads.  However, it was recognised that not all staff would want to move and, therefore, a good number of the additional staff required by a Level 1 centre with increased workloads would have to be recruited by that centre.  


j)          The modelling for the Review for the growth in numbers was most affected by the numbers of births rather than the overall number of people in an area.  UHL’s growth plan took into account their view of the growth in the population in the East Midlands and NHS England’s work had also taken into account how the demand for CHD services would change in response to changes in population.


k)         It was not possible to indicate with any certainty when the final decision would be made; it could be late in 2017 or early in 2018.  The volume of responses to the consultation had been high and NHS England needed time to analyse these and assess what they indicated in relation to the proposals. 


UHL’s Comments


a)         It was not UHL’s desire to become embroiled in a legal dispute with NHS England through the courts as both bodies were part of the wider NHS system.  However, UHL had taken legal advice on the proposals and were of the view that there was significant scope for challenge in relation to what was expected of public bodies and the process of how they should do it.


b)         If UHL were a Level 2 centre as a result of the proposals, they would be the only Level 2 centre in the country that did not have a Level 1 centre in their region.  The other Level 2 centres in the country were Cardiff, who were in a partnership with Bristol, Oxford were in partnership with Southampton and Edinburgh with Glasgow.  This would mean that UHL would need to create a partnership and a network with Level 1 centres outside of the region.  This network would include Birmingham Children’s Hospital, Queen Elizabeth Hospital Birmingham for adult patients and also Leeds.  It was also likely to include one or more centres in London.  This model for providing Level 2 services and care was untested as it did not exist anywhere else in the country. 


c)         The idea that a Level 2 centre is a Level 1 centre without surgery was erroneous.  It had been suggested that a Level 2 would undertake the simpler catheter interventions for example.  The existing Level 2 centres at Cardiff, Oxford or Edinburgh did not undertake the catheter intervention in children as they don’t have the surgical expertise in the centre to intervene should there be any complications from the procedure.  UHL would not wish to undertake keyhole procedures if there was no the surgical expertise available as this would not be safe for the patient if they had to be transferred to another Level 1 centre many miles away.


d)         Existing Level 1centres also saw patients from Level 2 centres because they had the specialist equipment for specific imaging or scanning techniques that were required for Level 2 patients.  Level 1 specialist services and equipment were also required for Outpatients as they often need to undergo further tests on the day of their appointment provided by a Level 1 centre.  UHL felt that NHS England were unaware of these practicalities and the current proposals would mean that even more patients would be required to travel out of the region to attend a Level 1 centre.




a)         The points made by Sally Ruane in relation to the lack of published evidence to support the selection of 125 operations per surgeon as being a definitive figure needed to be addressed and fully evidenced by NHS England; rather than rely on a figure arrived at by the consensus of specialist clinicians, many of whom would benefit from these proposals.


b)         Few studies had been carried out and their findings differed and offered contradicting viewpoints.  One study suggested 250 operations per centre was a recommended level of activity.  Other studies showed that small centres could perform better than large centres and also that centres of equal size could perform differently.  These studies demonstrated that the evidence was mixed and complex and that there were many factors that contributed to good outcomes.  The outcomes of these studies suggested that focussing solely on the number of operations was not the best approach to providing a high quality service.


c)         The focus should be on the mortality rates of Level 1 centres as this was evidence of good outcomes for patients.  It was difficult to understand how a well performing centre such as UHL with mortality rates better than most was being proposed for closure.




a)         NHS England had not sufficiently considered the impact of travel of for severely ill children and the effect this could have on the mental wellbeing of parents, other family members and close relatives.  Mental health was a crucial aspect of the whole process.  The focus should be on the patient and the family and the care and support that is given to the family and not on the number of operations carried per surgeon.  It had been expressed many times that UHL gave excellent care and support and these proposals were putting more stress on people who are already under stress.


b)         There was still concern that the proposals did not adequately consider the impact of people in outlying areas such as Boston having to travel long distances many times during the duration of their care.   


c)         The impact of the proposals upon other members of family, children parents and grandparents needed to be fully considered as they could cause life changing effects to the family.  It could not be assumed that the immediate family would be on hand to provide support at a time of stress and crisis.  Not all families lived close by to their relatives and the proposals did not seem to consider its impact on the increased costs to families in maintaining the household, extra travel and accommodation away from home.  It was vitality important that children were not disadvantaged by choices which not of their not of their making and the proposals should also take into account their impact upon the social aspects of family and extended family life.


The Chair echoed members thanks to the parents and stakeholders for attending and giving the Committee their representations.  The representations clearly demonstrated that the issue was not simply a number game or about the number of procedures as quality of care was much broader than that.  The patient experience was integral to the whole process and should be recognised and all the representations had emphasised that the consistency and continuity of care was essential and that the support the staff that UHL provided was far beyond that which could be expected and they were almost part of the extended family and support network.  The importance of having care as close to home was important for families especially on the impact for other family members attending local children.  It was important that normal family life was maintained as far possible for all family members whilst coping with the demands placed upon them from caring for a child with CHD.  The emotional needs of the child and the family also needed to be considered; none more so than where a child also had other special needs.


The views expressed at the meeting would be incorporated into the Committee’s submission to the consultation process.  There was obvious frustration expressed by both the public and Members with the whole consultation process and the particular concerns over its equity and fairness.  The overall impression from the Committee’s meetings on this issue has been that NHS England had been put in the position of defending the proposals, which Members feel were indefensible for the reasons put forward.  This process had not been helped by a new Programme Director being appointed part way through the consultation process and, whilst that was not the fault of NHS England, they now needed to undertake considerable work to reassure the public about the process.



That the members of the public and the various stakeholders be thanked for their submissions and that NHS England take the views expressed at the meeting in account as part of the consultation process and when considering the final decision.

Supporting documents: