The Children’s Heart Federation (CHF) is dedicated to helping children with congenital or acquired heart disease and their families in Great Britain and Northern Ireland.

Congenital Heart Disease (CHD) is a general term used to refer to a series of birth defects affecting the heart. It is the most common type of birth congenital condition found. Half of all babies born with CHD will require surgery within the first year of life, sometimes immediately after birth, while the other 50 per cent may require future surgery or medication at some point during childhood. In some cases CHD is diagnosed during an ultrasound scan prior to birth. More commonly, it is diagnosed after birth.

The outlook for children with congenital heart disease varies depending on the type and severity of the heart defect. However, in most cases, the outlook is reasonably good. Due to recent advances in heart surgery, more than 80% of children with CHD will survive into adulthood. As more people with CHD are now living into adulthood, new challenges are posed for their treatment as some people with CHD have complex health needs and require lifelong specialist care. We are a parent-led charity consisting of more than twenty organisations, whose main aim is the support of families of children with heart conditions. We also support a network of over 4000 individual parents.

Our response has been informed by the views of both our member groups and of individual parents.

Do you have any comments on the principles that we have proposed to underpin the process for making investment decisions about specialised services?

• CHF recognises and supports the need for NHS England to prioritise funding decisions based on clearly stated principles. These principles, however, need to reflect the particular circumstances surrounding rare and complex conditions which effect a relatively low number of patients.
• CHF is concerned that the proposed process seems lengthy and time-consuming and is worried that this will have an adverse effect on the natural development of new treatments for children with critical congenital heart disease when the development of such treatment often results from urgency and severity of clinical need.

2. Are there any other principles that you think NHS England should adopt as part of its process for making investment decisions about specialised services?

• NHS England should take account of the rarity of the condition, clinical severity and the urgency of need, when making an assessment.
• New interventions must be evaluated in a timely manner and, whilst that evaluation is pending, provision made for the urgent treatment of patients.
• When making an assessment of treatment new to the UK, NHS England should give due to weight to robust assessments undertaken in other health systems.

3. Do you have any comments on the proposed process for making investment decisions about specialised services

• CHF has for a number of years in calling for an equitable and streamlined, transparent process. The proposed process is lengthy, confusing and likely to lead to delay. The more sceptical amongst our members feel that this is simply an additional aid to rationing.

4. Are there any additional stages in the process that we should consider introducing

• CHF believes the process which involves almost fifty different stages is too complex and would like to see the number reduced – not increased.

5. Are there any additional stages in the process, where engagement with patients and the public should take place?

• CHF would like to see patients involved at the very beginning of the process – not at the end when they are simply being consulted on decisions already taken.

6. Please provide any comments that you may have about the potential impact on equality and health inequalities which might arise as a result of the principles and process that we have described?

• Our experience of the recent reviews of the congenital heart disease service has shown us how easy and damaging it is for the communication between the specialist congenital heart centres (?) to breakdown. We are concerned that such a long process will adversely effect the national development of new specialist treatments. We are concerned that  there will be a  creeping development of new  treatments in individual units leading to the risk of duplication of effort, inconsistency, and a possible increase in inequalities

7. Are there any other considerations that you think we should take into account when developing the principles and process for investing in specialised services?

• We think that there should more weight given to urgency and severity of patient need and provision made for interim access to treatment for patients in immediate clinical need,

8. As well as hearing your views on which treatments and services NHS England should prioritise for investment, we are also keen to hear your views on NHS England’s rolling programme of service reviews on how specialised services are delivered. If you have any views on which services should be prioritised for a service review in 2015/16, please tell us.

• We want the review of congenital heart disease services must be completed, with implementation to be taken forward without further unnecessary delay. The service delivery model should be based on the emerging national service model.  The time for not completing a service reconfiguration, that has been proposed since the 1990s, is over.  Political expediency has delayed this necessary change far too much.
• We are unclear as to whether scorecard methodology is to be used, if so this needs to consulted on as a matter of urgency as it is unclear from the consultation document if this approach is intended to be used between clinical groups of for treatments within a clinical groups.