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Help us hold on to our Congenital Hearts service

Hold on to our hearts 2016 logo


On Thursday 30 June we received a letter from NHS England (NHSE) regarding their assessment of Glenfield’s East Midlands Congenital Heart Centre (EMCHC), following the New Congenital Heart Disease Review. This review was commissioned after the collapse of the ‘Safe & Sustainable’ review in 2013.

The new review produced a set of standards that each surgical centre needed to meet to continue to be commissioned in the future.


What are the key standards that NHSE require?

  • a minimum of three surgeons per centre by 2017

  • centres must perform a minimum of 375 cases per year by 2019 to ensure surgeons can gain the necessary experience and develop their skills

  • children’s hearts services must be on the same site as other specialist children’s services

Currently, none of the 14 specialist congenital heart currently centres meet all of the new care standards. 

NHSE’s letter to us stated that they do not support our service as a centre where children’s heart surgery will take place in future, to which we had three days to respond. Please click here to read our full letter of response to NHS England’s letter


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Hold on to our Hearts - Emily Baby in Heart

Why is NHSE’s decision to stop children’s hearts surgery in Leicester not in the best interest of patients? 

  1. We provide a high quality service. NHSE want to close a centre beloved of its patients and families despite quality indicators that ought to alert you to the fact that this is a grave mistake. NICOR data due to be published in October 2016 will show that the clinical outcomes for our patients will be amongst the best in the country. In their initial feedback letter following their inspection in June 2016, the CQC reported: “We noted the excellent clinical outcomes for children following cardiac surgery at Glenfield Hospital.” PLUS Our patient and family satisfaction rates have increased to 99 per cent.
  2. We are on target to meet the number of surgical procedures. NHSE is proposing to close a top quality service despite the fact that the clinicians working in the service are confident of their ability to perform the required number of procedures.
  3. A compromised Paediatric Intensive Care Service (PICU). There is currently a lack of capacity of children’s intensive care beds nationally.The decision to remove beds from the system and destabilise the remaining Leicester PICU, which will become less appealing when recruiting, seems at best misguided and at worst, reckless.
  4. The worst possible domino effect. If NHS England closes the children’s heart service in Leicester, it is essentially undermining the vast majority of other specialist services for children in the East Midlands, which rely on intensive care capacity.
  5. Extra Corporeal Membrane Oxygenation (ECMO) Service. Leicester’s children’s respiratory ECMO service is the largest in the country accounting for 50 per cent of all capacity nationally. As NHS England is aware, Leicester pioneered ECMO in the UK and as a consequence there are many children and adults alive today who have our clinicians to thank for a second chance of life. When assessing our surgical service, NHSE stressed the importance of achieving a certain critical mass of patients. It therefore strikes us as either peculiar or convenient for those making the decisions on our future that this same principle does not apply when considering ECMO.


Hold on to our Hearts - Glenfield Hospital in Heart

What was our response?

John Adler, Chief Executive at Leicester’s Hospitals, said: “Over the last 18 months we have made excellent progress, with the support of our charities and partner organisations, to meet the standards set by NHS England through the New Congenital Heart Disease Review. We have expanded the number of beds, improved our outcomes, invested in staffing and briefed architects to create a new single site children’s hospital which will meet the co-location standard.

“We are confident that our clinical outcomes are now amongst the best in the country so we strongly disagree with NHS England’s decision and will not sit by whilst they destroy our fabulous service.”



What happens next?

On Monday 11 July, we met with 10 MPs from around the East Midlands to provide a full briefing ahead of their meeting with Jeremy Hunt (Secretary of State for Health), Sir Bruce Keogh (Director of NHSE), Dr Jonathan Fielden (Director of Specialised Commissioning) and other government colleagues. The outcome of this meeting was a promise of a meeting with Sir Bruce Keogh and a pledge that NHSE will give the public a chance to have a say on their decision. 

We are currently in a period of pre -consultation , during this time we have had a series of communications between UHL and NHS England. Please see below a timeline of correspondence – please click on the links to read the relevant documents:

Date

Action

Feb 2016

• UHL submit  initial  self assessment to NHSE based on final standards

July 2016

• 7th July - NHSE send ‘ Minded’ letter advising of intention to decommission level1 CHD services at UHL

• UHL send response    

Sept 2016

• 16th September - NHSE visit UHL have a private meeting with Execs and staff , and an open meeting with stakeholders. UHL presented all plans and mitigations to meet standards .

• 27th September - NHSE send letter to UHL outlining key areas of concern 1) number of cases per annum  2) co location 3) specialised services co location 4) Locum surgeons

Oct 2016

 

• 13th October UHL respond to NHSE letter 27th September providing more information

• 14th October – NHSE issue request for re submission of self assessment vs. standards, and impact assessment

Nov 2016

• 7th November – UHL return re submission of self assessment document, and impact assessment

• 14th November – reply from NHSE to 13th October letter – showing very little traction from original position despite the communication sent

• 29th November - NHSE meet cross party MP’s to discuss proposal. Main points raised are the same as in July. UHL asked to respond by Liz Kendall MP

Dec 2016

 

• 6th December UHL send response to NHSE for 14th November letter

• 7th December - UHL respond to Liz Kendall MP re points raised in cross party meeting with NHSE

Petition

On Thursday 9 February 2017 we presented 10 Downing St with a petition signed by 130,000 people who believe that decommissioning congenital heart services in the East Midlands is a mistake; we hope that their voices are heard.

Public Consultation

On Thursday 9 February 2017, at 9:30am, NHS England announced the launch of their consultation on the proposals to implement standards for congenital heart disease for children and adults in England. 

The consultation will run until 23:59 on Monday 5 June 2017.  It is longer than usual to allow for local elections taking place around the country. 

There is now much work to be done to respond to the consultation questions and we will update you. 

You can access the consultation documents here: https://www.engage.england.nhs.uk/consultation/chd/ 

How can you get involved?

You can show your support and get involved in our campaign to ‘Hold on to our Hearts’ by following us on Twitter, Facebook and Instagram, where we will be posting regular updates and developments. You could also share your stories with us by emailing communications@uhl-tr.nhs.uk

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