Dear friends and colleagues,

Last week was very busy and I have a great deal to share with you, so I apologise if this update is a little long!

The main focus last week was the consultation meetings held by NHS England on Thursday 9 February. There were two events, one for staff in the afternoon, and one for the public in the evening. Both events were fully subscribed. Thank you to all who attended or came to support the public event outside Tigers stadium and I am sure NHS England were left in no doubt to the strength of feeling and support for East Midlands Congenital Heart Centre!

The events were held in a ‘Question Time’ format and the NHS England panel comprising:

  • Will Huxter, Regional Director for Specialised Commissioning  
  • Professor Huon Gray, National Clinical Director for heart disease, NHS England and Consultant Cardiologist, University Hospital of Southampton
  • Dr Peter Wilson, President Paediatric Intensive Care Society, Clinical Director for Southampton Children’s Hospital

University Hospitals of Leicester (UHL ) were represented by:

  • John Adler, CEO University Hospitals of Leicester NHS Trust
  • Dr Aidan Bolger, Head of Service EMCHC, Consultant Adult Congenital Heart Disease University Hospitals of Leicester NHS Trust
  • Dr Frances Bu’Lock, Honorary Reader in the Department of Cardiovascular Sciences, University of Leicester, Consultant Paediatric Cardiologist within University Hospitals of Leicester NHS Trust

You are able to watch the public meeting again on https://www.england.nhs.uk/livestreams

There were a number of key themes that came up in both sessions and from these came some significant actions and statements that for ease I will summarise:

1. Surgical Numbers

Standard 2.1 is now the ONLY standard  that NHS England consider we do not meet – (this requires us to have three surgeons, and each surgeon to achieve a caseload of 125 averaged over three years and to have four surgeons delivering a caseload of 500 surgical procedures by 2021). We remain in dispute with NHS England about when the clock started for the “averaged over 3 years” element, with NHS England seeking to apply this retrospectively.

NHS England need to see more detail in respect to our growth plan, especially around our relationship with some of the hospitals in our network who historically have not referred patients to us. We will of course provide this to them as soon as possible but we have in place some very encouraging conversations with the relevant hospitals and asked NHS England to help us facilitate these further.

Ms Liz Kendall MP directly asked NHS England to help EMCHC achieve our growth plan by working with us on these crucial conversations. Mr Will Huxter agreed that NHS England will WORK with ALL Level 1 centres towards the standards, but unfortunately did fall short of agreeing to HELP us in this regard.

For clarity, the Trust’s growth plan respects the existing referral pathways and clinical decisions made by these Network hospitals, but feels that ALL patients in the East Midlands region should be given full and accurate information of all surgical centres available to them, in order to make an informed choice with the referring consultant.

Some patients will of course still choose to go out of the region and this is absolutely their right, but our encouraging conversations with these network hospitals will help facilitate full choice, and we feel will increase the number of patients who choose to have their care at EMCHC rather than leaving the region. There are already over 500 surgical operations performed on patients from the East Midlands region each year.

We strongly believe that offering EMCHC as an option to all patients presents far less risk than diverting all cases out of the region for their care.

Professor Huon Gray supported this in the meeting by saying:

“Any patient deserves to have all the information available to make the decision with their clinician as to where they receive their treatment. If this is not happening then that is clearly not good practice and does not meet the guidance from NHSE for healthcare in general. The  difficulty is  the decision about where the patient goes should not be directed by NHSE”

I am very encouraged by his statement and will repeat my point made in the meeting:

“The proposals on the table from NHS England if implemented will result in NHS England telling all the patients in the East Midlands where they can have their care – all patient choice will be removed!”

2. Inconsistency of Approach

There was significant concern about the apparent inconsistency of approach in relation to those centres that provide other specialised services in addition to congenital cardiac surgery. NHS England’s decision to continue to commission Newcastle Hospital, despite the fact it doesn’t meet the surgical caseload standard, nor the co–location standard, was challenged in both meetings.

NHS England state that the cardiac transplant service offered by Newcastle would not be able to be re-provided in the short term, and as such they need to support Newcastle and give them longer to achieve the standards.

In both meetings staff, parents and stakeholders outlined the significant specialist skills offered by our amazing ECMO team, and challenged the ability to replicate the expertise of this internationally renowned Centre of Excellence across the country. Concern was raised regarding the risk associated with this, and the ability to find suitably qualified and skilled staff to deliver the service. It was suggested in both meetings this should warrant EMCHC being given the same degree of flexibility to achieve the standards as being offered to Newcastle.

NHS England did not agree. However, Peter Wilson from the NHS England panel said that all of these concerns are being addressed by the Paediatric Intensive Care review that is being held concurrently to the CHD consultation and that key initial findings from this review will be fed into the CHD consultation. Will Huxter assured both meetings that no decision would be taken without input from the PIC review being made to the NHS England Board.

There was also concern raised at the lack of transparency in relation to the other Level 1 centres ability to meet the 500 caseload within the timescales, without any support from the outcome of this review. It was asked if all centres were being asked for the same degree of detail and were being scrutinised to the same level as EMCHC. NHS England were asked to publish the full impact statements and growth plans for all Level 1 centres and Mr Will Huxter agreed to do this.

3. Capacity

In both meetings the lack of PICU capacity, and the current surgery waiting list in other Level 1 centres was raised, with serious concern that the analysis on how many surgical and interventional cases that would need to be re-provided has been seriously underestimated and would only add to waiting times.

NHS England assured the meetings that prospective Level 1 centres who would have their case load increased had submitted plans to provide the increased capacity. There was however significant challenge as to the  capital investment needed to do this, whether it is possible in the timescales required, whether they would be able to staff these additional beds, and most importantly in the current situation the NHS finds itself – is re-providing beds that are currently delivered by centre with exemplary outcomes a good use of public money?

4. Travel Times

Both meetings spent a great deal of time discussing the modelling provided by NHS England in the consultation document, in respect to the additional travel times that would be required should the proposals go ahead. Cllr Rory Palmer challenged the outputs from this modelling and asked NHS England to share the raw data to allow everyone to analyse and understand how the results published had been achieved. ( We asked for this data on 7 February and have not yet received it from NHS England). Will Huxter agreed to go back and look at what information he was able to share.

There was considerable disagreement about the impact of these additional travel times, with some extremely moving statements and patient stories about the experience of families. These impacts are crucially important and I would urge everyone to ensure they complete the consultation questions and pass on how being the only region in the country without a Level 1 congenital heart centre will affect their care and that of their loved ones/patients.

It was noted that there did not appear to be a risk assessment in the consultation documents and there was a great deal of difference between travel times by ambulance, car and public transport. Our region is one of the largest in the country and patients from the East coast of Lincolnshire travelling by public transport would be severely challenged to get to an appointment in Birmingham or Leeds.

5. Staff 

In both meetings there was significant praise and acknowledgement from NHS England that the staff at EMCHC are highly specialised, capable, and our outcomes are fantastic. I think there was concern in the afternoon session that NHS England did not fully appreciate what is achieved and how we do it, and there were a number of invitations to NHS England to come and visit the centre and spend time talking to the staff.

6. Continuity of Care

There was a great deal of input from patients, families and staff in relation to the importance of the continuity of care from diagnosis in pregnancy all the way to end of life care, whether this be in childhood or as an adult. There was serious concern raised about how if the proposals went ahead care would become disjointed and the fact there is a lack of evidence to the viability of Level 2 centres. It was requested that comparison of our circumstances to those of Oxford when their surgical services moved to Southampton was inappropriate, as we deliver nearly four times the number of cases and our outcomes are completely different.

The evening session ended by an extremely moving and brave statement from Kirsten Lynch, mother of Poppy Lynch who is a patient at EMCHC. You can read the statement here and I would encourage everyone to do so and share this with as many people as possible. I think Kirsten’s brave statement clearly illustrates what is at risk and empowers us all to continue to do everything in our power to defend our wonderful service.

Overall, our team felt that the meetings were positive and useful. NHS England were shown the degree of knowledge, expertise and determination from all our staff, parents, friends and stakeholders. I was proud to be part of both sessions. A number of NHS England’s responses were helpful, but there is still more to do to convince them that they should be more proactive on helping us to meet the required numbers.

Moving forward the work continues; this week we are attending some crucially important meetings with some of the regional Health Overview and Scrutiny committees (HOSC). All of these meetings are open to the public but please note they are not public meetings – as such you can attend to hear the discussions but are not able to challenge or ask questions unless invited to do so by the Chair of the meeting. I would encourage as many of you as possible to attend, as it will help you understand the key points surrounding the consultation, but would request that if you do you respect the meeting rules.

The Health and Overview Scrutiny (HOSC) meetings are as follows:

Tuesday 14 March  10.15 – Nottingham / Nottinghamshire  Joint HOSC  – Nottinghamshire County Council offices, County Hall, West Bridgford, Nottinghamshire

Tuesday 14 March  14.00- Leicester, Leicestershire and Rutland Joint HOSC – meeting room G.01 and G.02  Ground Floor  City Hall, 115 Charles Street  Leicester  LE1 1FZ

Wednesday 15 March 10-00 Lincolnshire HOSC , Lincolnshire County Council County Offices, Newland, Lincoln, LN1 1YL

Heartlink have kindly provided a coach for anyone who wishes to attend the Lincoln HOSC meeting on Wednesday. The bus is leaving from Glenfield Hospital main reception at 07.30am and anyone who would like a place please contact Gill or Geoff Smart on gsmart10@sky.com or Chris Rigby on 01455 282 360.

Due to how much information there is to impart this week, I will be issuing another communication on the events we are arranging to support you in completing the consultation questions separately. The EMCHC website has a copy of our reference guide, and links through to the NHS England consultation hub and questions on http://www.eastmidlandscongenitalheart.nhs.uk/

Thank you for your continued support and we must now ensure that we maintain the superb momentum we have achieved to date and encourage as many people as possible to have their say in the consultation process, and complete the consultation questions

 


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