On the 27th June we attended the Leicester, Leicestershire and Rutland (LLR) Joint Health Overview and Scrutiny Committee (HOSC) meeting. NHS England were in attendance along with a very large number of our stakeholders and supporters. The purpose of the meeting was for the committee to hear statements relating to impact on stakeholders should the NHS England proposals for Congenital Heart Disease services be approved. There were some very moving and challenging statements made (available here: Document 1 and Document 2) which resulted in the Joint Committee raising significant concern and requesting more clarity from NHS England.

Following that meeting, the LLR Joint HOSC submitted a very strong response to the NHS England consultation questions. They also took the unusual step of writing to the Secretary of State for Health to express their concern and to request that NHS England reconsider their proposals to decommission Level 1 CHD services at EMCHC. Very importantly they also advised the Secretary of State that should this not be the case they would seek to refer the proposal to him in accordance with Regulation 30 of the Local Authority (Public Health and Wellbeing Boards and Health Scrutiny) Regulations 2013.

If you remember back to the previous ‘Safe and Sustainable Review’, it was this process, then instigated by Lincolnshire Health Overview and Scrutiny Committee, that resulted in the Independent Reconfiguration Panel being established, and their eventual recommendation to stop the review. We are extremely grateful to the LLR Joint Committee and indeed all of the Health Scrutiny Committees across the region for their support.

On Saturday 1st July over 50 of our patients, parents and families attended a consultation meeting with NHS England at Glenfield Hospital. The meeting gave our supporters the opportunity to ask NHS England more questions and be assured that no final decision has been made at this stage, and all the input from the online consultation responses will be fed into the decision making process. Unfortunately, NHS England were not able to provide more detail of what that process would be, who would be involved, and what the timescales would be before a recommendation is put to the NHS England Board. Serious concern was raised by the stakeholders in relation to this lack of clarity especially as the threat of decommissioning is so detrimental to the service in respect to its patients, families and staff and the relationships we are trying to establish across the region to increase our surgical referrals.

Our Trust Chairman and some of the Trust Board visited the unit on Friday last week; it was a very welcome visit and staff, patients and parents were reassured by the support for the unit communicated by our Chairman and his colleagues .  The Trust’s formal response to the NHS England consultation questions was presented at the Trust Board meeting yesterday 6th July and will be submitted via the NHS England consultation website  along with a hard copy sent to Jon Stewart, Acting Director of Specialised Commissioning at NHS England.

An overall summary of UHL’s position on the review, and our proposals as to a way forward, is:

  • The evidence shows that, like other centres, we currently deliver high quality care to our patients
  • We accept NHS England’s overall approach i.e. standards-based commissioning, although we have concerns about the interpretation of some of these standards
  • We welcome the fact that for UHL NHS England has confirmed that there is only one outstanding standard about which it has concerns i.e. case numbers
  • To address these concerns, during the consultation period we have submitted a more comprehensive and updated growth plan demonstrating how we can meet the case numbers standard
  • We would like NHS England to accept this plan and support us in further developing our regional network
  • We would ask NHS England to accept that supporting this approach carries significantly less risk in terms of destabilisation than does the decommissioning of our centre
  • We would ask NHS to acknowledge that the decommissioning of our centre would substantially reduce choice for the population of the East Midlands and therefore an alternative viable approach to achieving the objective of compliance with the standards is preferable

The Trust Board approved the response and made the following comments:

  1. The response is fully endorsed by the UHL Trust Board
  2. The Board acknowledge and are grateful for the considerable support received during the consultation process from a wide range of stakeholders
  3. The Board welcomes the initiatives from key influential partners to support the recommendations of the  UHL response
  4. The Board notes with concern that the longer the period of decision making and implementation, the greater the dangers and risk to our patients and the service we deliver
  5. The Board urges a speedy resolution of the decision making process

Full copies of the Trust response and the Growth plan will be published on the East Midlands Congenital Heart Centre website following formal submission to NHS England.

On Tuesday 4th July we met with a number of the East Midlands MPs at the Houses of Parliament. The meeting, organised by Liz Kendall MP, was a very useful opportunity to update our local MPs on the current situation in the consultation process. They commented that the retention of East Midlands Congenital Heart Centre had been a hot topic on the doorstep of their General Election Campaign and they expressed their full support. Liz Kendall spoke on behalf of the MPs and expressed concern that despite us complying with NHS England’s request to submit a more detailed plan of how we are going to meet the surgical caseload standard in the timeframe required, we have to date received no feedback or comments from NHS England. She agreed that a cross-party letter would be drafted and sent to NHS England requesting that they accept the invitation offered by myself to the senior NHS England team to come to our hospital and discuss the growth plan with us. Edward Argar, MP also raised a question in the House on Tuesday raising concern over the process and the impact of the East Midlands losing its only Congenital Heart Surgery centre.

We are delighted to share with you a short documentary made by Ellie Kemp, from Keyworth, who is a patient at the East Midlands Congenital Heart Centre. Ellie made the film at college in support of the service. The film shows what living with congenital heart disease can be like; both through the challenges our patients face, but also how well they do at the time of surgery and afterwards.  We feel the film highlights the quality of the staff and the care given at Glenfield, not only to the patients at their time of greatest need, but also to the parents, families and friends who are crucial to the wellbeing and recovery of our patients. We would like to thank Ellie for her fantastic work and hope her message can be shared widely to help understanding of congenital heart disease .’  You can watch the documentary here. (Open in Google Chrome)

It is so pertinent to see the key messages presented in this film at this time when the East Midlands Congenital Heart Centre is under threat of losing its ability to perform all congenital heart surgery on children and adults. Time is fast running out for you to have your say as the public consultation closes on Monday 17th July. It would be fantastic to have a last surge of responses to the consultation questions and I would ask everyone who has not completed the questions to please go online and do so. 

Help and support to complete the consultation questions can be found on our East Midlands Congenital Heart website: http://www.eastmidlandscongenitalheart.nhs.uk/consultation/

The Save Glenfield Children’s Heart Campaign (SGCH) are holding a protest meeting on Saturday 8th July at 1pm, Gallowtree Gate, Leicester. There will be SGCH helpers available on the day to support anyone who would like to respond to the online consultation questionnaire.

As always I must end with a huge thank you to all the staff, patients, parents , stakeholders and supporters who have worked so hard during this very difficult consultation period. I hope we will be able to provide some more clarity and certainty soon.