NHS England in ‘listening mode’ in preparation for consultation on congenital heart disease proposals
Hello, and welcome to my latest blog, which I hope will provide you with an update on where we are up to in terms of our engagement about proposals for improving congenital heart disease services in England.
I want to remind you about the reasons for us doing this work, and also inform you about developments in specific parts of the country.
The driver for NHS England’s work is simple – we want to ensure that every patient, who requires care for congenital heart disease, can be confident that that care is delivered from a centre that meets the national standards.
These standards were developed by clinicians, patients, and other key stakeholders, and were the subject of rigorous public consultation, before being formally agreed by our Board in July 2015.
We know that implementation of these standards is critical if we are to provide the services our patients deserve. We know this, because stakeholders – including patient groups and families – have told us. We are strongly committed to ensuring that people with congenital heart disease have access to high quality, resilient services – achievement of the agreed national standards is the best way of securing this.
However, any potential change will not happen overnight. We are currently preparing for formal public consultation on our proposals. Commissioning decisions will not be made until spring, at the earliest, next year, and only after feedback received during that consultation has been considered. Any changes to current service provision will be carefully managed, and we will work with patients, and their clinical teams, to ensure that transition is as smooth as possible.
At the moment, we are meeting with providers across the country to discuss our proposals and their implications for individual hospital trusts. We have met with staff, patient groups and many others with an interest in the services, to answer questions; have visited existing facilities, to hear about plans for the future; and have sought to clarify some points where we needed further detail.
So far we have visited Great Ormond Street, the Evelina, University Hospitals Leicester, the Royal Brompton, Birmingham Children’s Hospital, and Barts. We also have visits lined up at Newcastle, Alder Hey, Liverpool Heart & Chest Hospital, and Central Manchester University Hospitals, with other hospital visits still to be arranged.
I would like to thank all of the providers who have hosted visits so far, in particular the clinical staff who have made time within their busy schedules to meet with us. We are in listening mode at the moment, and very open to debate and discussion. Since publishing our proposals in early July, we have dealt with almost 70 separate pieces of correspondence relating to our proposals, so if you do have any queries, please get in touch with us at england.congenitalheart@nhs.net
The discussions currently taking place with CHD providers are critical as there is still opportunity for providers to produce evidence, or come up with solutions, which will enable them to meet the CHD standards in full by the required timescales. This would influence what we finally consult on.
University Hospitals Leicester NHS Trust
We know that University Hospitals of Leicester NHS Trust has put into the public domain correspondence sent to NHS England. The letter relates to a number of questions which we put to the Trust, after our visit there on 16 September.
In the interests of balance, it is important for people in Leicester, the wider East Midlands and beyond to understand the background to some of the questions we asked. There remain some fundamental areas where our assessment of the Trust’s current position – based on the information provided to us by the Trust – shows that Leicester does not currently meet the national standards, and which it needs to address.
The national standards require a minimum of three consultant surgeons, each undertaking a minimum of 125 operations per year, averaged over the three years leading up to April 2016. Leicester has reported carrying out 331 cases in 2015/16, well short of the minimum requirement for 3 surgeons of 375 cases. The Trust has told us that it has one substantive consultant surgeon and two locums.
The national standard further requires four consultant surgeons, each undertaking a minimum of 125 cases per year, averaged over the three years leading up to April 2021 – which would require an increase of over 50% on the numbers achieved last year. University Hospitals Leicester has not yet provided us with a plan setting out how they would achieve the 500 cases required.
This is a really important standard for patients. We want patients to be confident that their surgery is being delivered by an expert in this field, who has the back-up of a team of fellow surgeons, to cover periods of annual leave, sickness and out-of-hours cover. On the basis of the information provided so far, we cannot guarantee that this is the case in Leicester.
The national standards also have requirements for particular clinical services to be located together on the same site, so that patients and their families can benefit from treatment from a team who know each other well, and which is able to respond in a joined up way at very short notice when required. University Hospitals Leicester has not yet provided the information we require to demonstrate that these standards are met.
We will continue discussions with colleagues at University Hospitals Leicester, during this pre-consultation period, and will use this blog to share further information about any developments at Leicester or elsewhere as appropriate.
Will Huxter
Will Huxter is Regional Director of Specialised Commissioning (London) at NHS England and currently chair of the NHS England Gender Task & Finish Group.
Prior to joining NHS England in June 2014, Will worked in a range of commissioning roles within the NHS, and for five years at an NHS Trust.
He has also spent eight years working in the voluntary sector.
28 comments
Your “one size fits all” fantasy ignores the wonderful work this Unit has consistency delivered. Centralisation will inevitably lead to increased delays for patients and excessive travelling times for parents. Why not come clean and admit that the real driver behind these proposals is money, not quality.
In 2008 I suffered a heart attack and was admitted ccu at the Glenfield hospital.I find the NHS idea of closing units at the Glenfield a very dangerous decision as this would prolong any treatment a heart patient would receive. As you may be aware the leicester royal infirmary have been under scrutiny for patients having too wait for hours in the back of a ambulance because the a&e department handle the pressure which I find ridiculous in its self as the city of Leicester is all ready too big for one department too handle so too close another important part of anyone’s treatment is a dangerous option but once again it’s not about the patients it’s all about figure crunching and ways of saving money.
As a mother of a 9 year old daughter who has been under the Royal Brompton for her cardiac care her whole I am enraged with the proposals to close this marvellous hospital.
Your reasons for doing this are that you’want to be confident that care is delivered from a centre that meets the national standard’ yet at the latest public consultation NHS England themselves admitted that there is no evidence to back decision to close heart unit.
The congenital heart disease services they provide are amongst the best in the country.This is a hospital that is renowned for being the world’s leading centre for adult CHD research.
With regards to the ‘co-location’they have a very effective system in place with Chelsea & Westminster Hospital.
The facts are clear. We all know these plans are not about patient care but money.
If this hospital closes you will need to sleep at night knowing that you are responsible for hundreds of parents/patients not being able to.
What patients want is to get good care and outcomes from their surgery. The use of phrases such as ‘not meeting standards’ implies that Leicester’s Glenfield unit is not achieving this. However the figures show that surgery outcomes are excellent at this unit -and the patients stories indicate good care as well. As an adult with a congenital defect recently found and recommended for surgery these are what give me ‘confidence’.
The standards developed are surely an aim for centres not a black and white cut-off. Or are we to assume that all hospital units not meeting other national standards -eg for waiting times in A&E, or staffing levels – will be recommended for closure?
Dear Sally
I can only really comment on the standards for congenital heart disease on this blog. This particular set of standards was developed by patients, carers, clinicians, and other experts, over a two to three-year period. They were the subject of robust public consultation before being approved by the NHS England Board.
Parents and carers have told us that implementation of these standards is absolutely critical if we are to be in a position to guarantee consistent levels of service in congenital heart disease care across the country.
There are almost 200 standards in total, a number of which focus on issues relating to outcomes. We do not doubt that patients currently being treated at Glenfield are receiving good care, but we need to ensure that this is consistent across all units in England and that units are resilient into the future. The only way we can do this is to implement the standards.
NHS England say they want to listen. I hope they listen to those marching in Leicester on 29th October to stop what one MP has called the “wanton destruction” of the service at Glenfield in Leicester. Please join us at https://www.facebook.com/events/540685566131322/?ti=icl
Unfortunately the only place this will end is in a court of law as NHSE appear to have one rule for some units and another law for the others
Dear Richard
Thank you for your comment. We are committed to implementing national standards, developed with clinicians, patients and families, and other stakeholders, and agreed by NHS England following public consultation.
The aim is to ensure that patients across the country have access to high quality, resilient services. No commissioning decisions have been taken, and we are engaging with patients, the providers, and other stakeholders to consider our proposals, ahead of public consultation.
Yours
Will Huxter
We put both the letter from NHS England and our response in the public domain in order to keep our stakeholders informed of developments. The correspondence gives the full detail of what are some complicated issues. I would recommend that intersted parties read the full correspondence rather than Will Huxter’s somewhat partial account here.
John Adler, Chief Executive, UHL, Leicester.
NHS England say ‘In line with our Mandate from Government, NHS England has a responsibility for developing organisational policies around the open data and transparency agendas’, and the Chief Nursing Officer is quoted by NHSE as saying ‘Absolute transparency is the key to driving improvements in standards of care’. And yet Mr Huxter criticises you for putting the correspondence in the public domain. Either he hasn’t read his own organisations mandate, or he is ignoring it because he knows his arguments are so weak. Absolutely shameful.
Dear Peter
I would like to take this opportunity to make it clear that I have not criticised colleagues in Leicester for putting correspondence into the public domain. What I have done is suggest that – in the interests of balance – it is important that NHS England be given opportunity to comment, or to have a right of reply. My aim has only been to provide context to the correspondence, which is what I hoped to do via this blog.
I can assure you that I am committed to ensuring that NHS England is open and transparent in all of its communications with stakeholders, and look forward to updating you, and other stakeholders, further via this blog.
“Will Huxter”
——
Who are you, please?
Most people who put up these articles also post a short CV at the end, with a picture.
———
Also, who is this “we” you keep referring to throughout your rather breathless piece?
Thank you in anticipation.
Dear Kassander
Usually I do have my picture and biog at the end of all of my blogs, but unfortunately it has been omitted on this occasion. I can only apologise, and will ensure that it is installed as soon as possible.
Yours
Will Huxter
I’m afraid I have lost faith that any review of children’s heart services will ever be implemented! My daughter was caught up in all the furorer four years ago between Leed’s and Newcastle, she suffered massively as a result, failed by a unit that wouldn’t refer her for a transplant and had a stroke before the heart came. Whatever unit you close they will launch a legal protest!!! Nothing changes sadly.
Dear Michelle
I am very sorry to hear about you and your daughter’s experience, and completely understand why you may have concerns about this latest review of congenital heart services.
However, this review has been driven by a focus on standards for CHD services, which were developed with the clinicians working in the field and a wide range of patient and public stakeholders. As commissioners, it is our duty to do the very best we can for all of our patients, regardless of where they live. We have nationally agreed standards for CHD now, and we consider it critical that we implement these standards, in order to ensure equal access to high quality, safe and effective care, right across the country.
I wish you and your daughter well….
Yours
Will Huxter
There is much confusion whether your proposed closure of Brompton CHD Unit also includes the Adult Congenital Heart Dept. If it does why do you want to put the lives of so many patients who have undergone pioneering surgery in ’60s ’70s to help hospital like the Royal Brompton Hospital become one of the worlds leading hospital in CHD and ACHD at risk after spending millions on us. You should be ashamed of yourselves! Is this the thanks you give to all the pioneering surgeons and consultants in England who saved their patients, many of whom will be turning in their graves with this news.
Thank you for the opportunity to clarify the position on this.
Our current proposals would result in NHS England no longer commissioning CHD surgery for adults or children from the Royal Brompton. However, no final decisions have been taken, and we will be going out to public consultation on our proposals, following engagement with the Royal Brompton and other stakeholders. We are in regular contact with the Royal Brompton and are open to discussion about how the nationally agreed standards for both adults and children can be met.
Yours
Will Huxter
It might be helpful to link to the proposals in question. https://www.england.nhs.uk/2016/07/chd-future/
Mr Huxter, your focus on Glenfield is disproportionate, unfair and worrying in the extreme. It is increasingly clear that you are targeting Glenfield and have already made your decision.
The academic who completed the study that you’ve taken the 125 figure from has questioned your use of her work. The “shortfall” in procedures amounts to some 1.2 extra procedures per surgeon per MONTH. There is a well developed plan to collocate services at the LRI site -you seem to be wilfully ignoring this.
Finally, as a parent of a baby saved by the amazing team at Glenfield, I am frankly enraged by the statement that “we want patients to be confident that their surgery is being delivered by an expert in this field.” The surgical team are world class and I challenge you to say which surgeons are not “expert in this field”. Will you do so or give any other justification for this outrageous statement?
Well said Mike. Myself a mum from Manchester to a daughter saved by the MOBILE ECMO that Leicester provides. I worry that this service will also be lost if changes are made.
Dear Charlotte
NHS England is carrying out national reviews of both paediatric critical care and specialised surgery for children. The critical care review includes both ECMO and paediatric transport in its scope.
Yours
Will Huxter
Could this so called academic inform us why many babies and children from nearby hospitals for example Northampton, were not allowed to be referred to Glenfield but instead had to travel to London and Southampton? A deliberate ploy which was deceitful and manipulative to ensure that Glenfield will fall just short of its required cases. Political pawns.
Has anyone raised the question as to why these numbers were not met? When hospitals such as Northampton and Kettering are ordered not to refer to Glenfield but instead must use London or Southampton!! This is not only terrible for the families concerned but could be viewed as being a deliberate despicable plot to ensure that Glenfield do not receive their quota.
Dear Debra
In reply to both of your comments, patients from across the country are currently referred by their clinicians to a range of different providers of surgical care. This is a long-standing arrangement, pre-dating the agreement of the national standards.
Yours
Will Huxter
Dear Mike
I would like to take this opportunity to assure you that we are not ‘targeting’ Glenfield in any way. The reason that Glenfield was mentioned in my blog was simply because the trust had put correspondence between NHS England and the trust into the public domain. I was unaware of this until after the fact, and therefore felt that – in the interests of balance – I should provide some context around that correspondence, which is what I sought to do, via my blog.
What we are committed to doing is making sure that people across the country with CHD have access to both surgical and medical expertise that is resilient now and into the future, providing the full range of multi-disciplinary and specialist support. This is not a criticism of any staff members, who should be proud of the care they deliver.
Yours
Will Huxter
Mr Huxter, your exact words were “we want patients to be confident that their surgery is being delivered by an expert in this field.” Well we, the patients and their parents, are already confident of this and it don’t need your fixation on 125 to give us this confidence.
If you meant no criticism of surgeons at Glenfield, why did you even make that statement?
It is so disheartening to have these tired old arguments for closing down our wonderful paediatric heart services. I think that the “Listening “is not very apparent.
Dear Hilary
I can assure you that we are committed to listening to as many stakeholders as possible during this engagement period, and will be providing a wide range of opportunities for further comment and debate, during our forthcoming formal consultation.
Yours
Will Huxter