Response from CHF to the proposals from NHS England to implement the standards for congenital heart disease (CHD) services for children and adults in England

    1. The capacity in which we are responding

 CHF is a national CHD patient/parent led organisation that represents patients with all forms of CHD and their carers. We have taken account of the views expressed by both our partner organisations and by individual parents and carers.

    2. Our response to NHS England’s proposal that in future CHD services will only be commissioned from hospitals that are able to meet the full set of standards within set time frames.

 CHF supported the development of national standards and now supports the proposal that services should only be commissioned from hospitals that are able to meet those standards in a timely manner. Where it is agreed to vary the arrangements, the reasons should be clearly stated in a form that is accessible to patients and their parents/carers.

Children and adults with CHD require lifelong monitoring and, for some, lifelong care. All patients need to access care from their local acute hospitals and some will need, also, to access care at a specialised centre with a specialised team working together.

    3. Our response to NHS England’s assessment that three hospitals are not able to fully meet the standards within set time frames and their proposal that surgical (level 1) services are no longer commissioned from these trusts:

    •  Central Manchester University Hospitals NHS Foundation Trust (adult service)
    • Royal Brompton & Harefield NHS Foundation Trust (services for adults and children)
    • University Hospitals of Leicester NHS Trust (services for adults and children)

We note that at all the public consultation meetings held in June we were assured by the speakers from NHS England that all current services were safe.

We understand, however, that in the summer of 2017 the service at Manchester entered difficulties and emergency alternative arrangements for treating existing patients are currently being put in place. This has caused considerable distress to the patients treated at that centre and great uncertainty to the patients and/or their parents/carers.

This is a repeat of past situations, some of which have been referenced in the consultation document, where the NHS publicly stated a service was safe, despite knowledge that behind the scenes there were major problems, and only taking action once serious harm to patients had occurred.

Patients and their carers no longer know who to believe:

a) the local clinical staff who have successfully treated them and who tell the patients that some of the standards are not evidence-based and therefore suspect;

or

b) NHS England who argues that that although the current service is safe it is unsustainable.

We have heard some clinicians state that, because of the scrutiny that the service and they personally are under, they are forced to treat conservatively, thereby reducing the options that might be available to patients with very complex congenital heart conditions.

Conversely, we have heard parents express concern that due to the emphasis on surgery numbers surgeons may feel pressured to perform operations, when conservative management would be wholly more appropriate.

      1. 4. Our response to the NHS England’s proposal to commission specialist medical services (level 2) from Central Manchester and Leicester if they no longer provide surgical (level 1) services.

In principle, we support the commissioning of (level 2) services from Central Manchester and Leicester and would like to think that both hospitals will agree to provide a (level 2) specialist medical service.

Aware, however, of comments expressed by cardiologists who are concerned about being “deskilled’’ we wonder whether this is realistic.

Also, conscious of the current staffing difficulties in Manchester and Leicester and the resulting uncertainty and worry caused to patients and parents/carers, we feel that if appropriate staffing cannot be guaranteed, there should be a clean break rather than allowing a prolonged withering of the service.

      1. 5. Our response to NHS England’s proposal to support, if possible, The Royal Brompton to work in partnership with another hospital that provides surgical (level 1) services for children).

 CHF recognises the considerable expertise of the Royal Brompton and strongly supports the continuation of an adult service at that hospital. We feel that it is essential to recognise the expertise of the team at the Royal Brompton, in both areas of treatment and research and to ensure that its expertise is not dissipated.

We are aware that in the past the Royal Brompton has discussed working in partnership with another London hospital and sincerely hope that those discussions have been revived. 

      1. 6. Our response to NHS England’s proposal to continue to commission surgical (level 1) services from Newcastle Upon Tyne Hospitals NHS Foundation Trust.

 CHF shares the views expressed in para42 of the consultation document, namely that Newcastle offers a unique service to patients with advanced heart failure, including heart transplantation and bridge to transplantation.

We understand that patients requiring this service are willing to travel and stay in Newcastle. Due to the length of time it would take to establish this service elsewhere and the adverse impact on patient outcomes whilst a new service is established, we believe strongly that the service should remain in Newcastle.

      1. 7. Our comments on the matter of some patients (and their carers) travelling further for the most specialised care including surgery if the proposals, to cease to commission surgical (level 1) services from the specified hospitals, are implemented.

 Throughout the various reviews the view taken by many parents is that that they are prepared to travel for surgery/interventional procedures but want ongoing care as close to their home as possible.

Regardless of whether any of the current (level 1) services are decommissioned, we urge the setting up of as many specialist outreach clinics as is viable so that ongoing care can be delivered as close to a patient’s home as possible.

      1. 8. Our comments regarding what more might be done to avoid, reduce or compensate for longer journeys where these occur.

 Supporting a child being treated at hospital some distance from their home can be costly in terms of money expended on travel, accommodation and subsistence and sometimes through loss of income, due to parents taking unpaid leave so they can be with their child.

We note the requirement for more information to be given to families and urge that this happen systematically and includes information on the NHS Low Income Scheme; local long-term parking arrangements and patient transport schemes.

We urge clinicians to trust and therefore make better use of telemedicine (the exchange of medical information from one site to another through electronic communications) including for pre-operative assessments.

We also ask that serious consideration is given to the use of other technologies such as pulse oximeters to ease/speed up early diagnosis; or the self‑monitoring of coagulation levels by patients (see NICE Diagnostic Guidance – DG14) thereby reducing the number of trips to hospital for testing and avoiding absences from school or employment.

      1. 9. Our comments in respect of NHS England’s equality and health inequality impact assessment of their proposal.

There is clear research evidence that when patients are involved in the decision-making process better decisions are made and we recognise the commitment of the NHS senior leaders to involve patients in this process. We feel, however, there was a gap between that commitment to patient involvement and the reality of patients’ experiences, particularly with the involvement of parent groups.

There was a naivety about how patients and their representative groups were involved, with a failure to recognise their different areas of expertise, ie:

      • local support groups have a good knowledge of local services
      • national groups have a good overview and the ability to compare the service provided by different hospital trusts.

We recognise that many of the patient support groups in the congenital heart community are ethnically white and hope that robust efforts were made by NHS England to seek the views from other ethnic backgrounds. 

      1. 10. Our comments regarding NHS England’s impact assessments in respect of the proposed changes.

There is concern amongst parents that when NHS England do announce their decision there appears to be absolutely no transition plan and no pathways in place and they feel that this leaves a black hole between the announcement and then the amount of time the hospitals have to prepare.

 Parents feel that it would be naive to believe that staff in decommissioned services would be happy to remain in post during that time and fear that the service would become dangerously precarious.

      1. 11. Other Comments

We are conscious that this service has been under review for many years, and this has resulted in a breakdown in relationships between different centres, particularly the specialist centres. It has also resulted in considerable uncertainty and worry to patients and their carers. We hope that NHS England will undertake work to rebuild these relationships

We have heard some clinicians state that, because of the scrutiny that the service and they personally are under, they are forced to treat conservatively, thereby reducing the options that might be available to patients with very complex congenital heart conditions.

Conversely, we have heard parents express concern that due to the emphasis on surgery numbers surgeons may feel pressured to perform operations, when conservative management would be wholly more appropriate.

 

      1. 12. Replied by email to:

england.congenitalheart@nhs.net