Health and Social Care Bill

Memorandum submitted by Bliss (HS 03)

1. Introduction

1.1 Bliss is the UK charity dedicated to ensuring that premature and sick babies survive and go on to have the best possible quality of life. We provide practical and emotional support to families, provide specialist study days and training to support doctors and nurses to develop their skills, and campaign for essential change within government and the NHS.

2. Summary

2.1 This written evidence sets out Bliss’ position on the key aspects of the Health and Social Care Bill relating to neonatal services. Our concerns relate to:

· The new commissioning structures, which we believe could lead to a serious fragmentation in the delivery of care for vulnerable babies.

· Whether clinical and lay representation is taken into account in the commissioning of neonatal services.

· The need to ensure integration between neonatal and maternity services so that services for women and babies are delivered in a safe and seamless way.

· The arrangements required to ensure a smooth and planned transition to the new NHS structures, including the continuation of the work of neonatal managed clinical networks.

3. Commissioning of neonatal services

Clause 11 – power to require the Board to commission certain health services

3.1 The Command Paper Liberating the NHS: Legislative framework and next steps sets out that the NHS Commissioning Board will be directly responsible for commissioning specialised neonatal services. The definition of specialised neonatal services, as set out by the NHS Specialised Services Definitions Set [1] includes all levels of neonatal care: special care, high dependency and intensive care (please see section 7 of this paper for more information on this).

3.2 However there is a lack of clarity about whether it is the Government’s intention that the NHS Commissioning Board commissions all three levels of neonatal care. Evidence gathered by the System Alignment in Specialist Neonatal Care Subgroup of the National Quality Board (NQB) shows that in some parts of the country the different levels of neonatal care are commissioned by different bodies: with intensive care and high dependency care commissioned by Specialist Commissioning Groups (SCGs), and special care commissioned by Primary Care Trusts (PCTs).

3.3 This fragmentation in the commissioning of different levels of neonatal care negatively impacts on the ability of services to plan capacity and manage the flow of babies between intensive, high dependency and special care. From a clinical perspective, the distinction between the three levels of care is often fluid as a baby’s condition can improve or deteriorate in a very short space of time while in the same cot.

3.4 This fragmented approach has been widely criticised, including by the National Audit Office, the NHS and Department of Health in their Toolkit for High Quality Neonatal Services and a subgroup of the National Quality Board set up to advise the Board on the future of neonatal care. Bliss believes that the reorganisation of commissioning structures presents an opportunity to ensure that neonatal services in the future are commissioned in a coordinated way across all levels of care. We therefore urge the Government to ensure neonatal services are commissioned in their entirety by the NHS Commissioning Board.

3.5 Recommendation: Explanatory Notes published alongside the Bill outline that the NHS Commissioning Board will be responsible for commissioning specialised services. However the relevant provision in the Bill (Clause 11) does not clearly set out if the definition of specialised services used is that outlined by the Specialised Services National Definitions Set [2] . Bliss recommends that Clause 11 subsection 1(d) clearly sets out that the NHS Commissioning Board will commission those services set out in the Specialised Services National Definitions Set.

4. Clinical and lay involvement in commissioning

Clause 19 – The NHS Commissioning Board: further provision

New Section 13L - Public involvement and consultation by the Board

4.1 Bliss believes that for the NHS Commissioning Board to be able to effectively commission neonatal services, mechanisms must be in place to facilitate close working with neonatal service providers. Bliss recommends that this close working can be achieved in neonatal care, through commissioner membership of neonatal network boards.

4.2 Bliss also believes it is vital that parents of premature and sick babies are involved in the commissioning of neonatal services. Parents currently make a very valuable contribution to strategic planning and commissioning of neonatal services through neonatal network boards, all of which include parent representation.

4.3 Recommendation: Clause 19, New Section 13L should be strengthened to place a duty on the NHS Commissioning Board to involve service users, or as is the care in neonatal care, their parents or guardians, and consult the public in the commissioning processes of the Board. This is in order to take into account the views of not only medical experts but also parents with direct experience of having a baby admitted to neonatal services when commissioning this area of care.

5. Role of NHS Commissioning Board in relation to maternity services

Clause 9 – Duties of consortia as to commissioning certain health services

Clause 10 – Power of consortia as to commissioning certain health services

Clause 19 – The NHS Commissioning Board: further provision

5.1 Clauses 9 and 10 place responsibility for commissioning of maternity services with GP consortia. This is in line with the Government’s position, outlined in the recent Command Paper. However the Command Paper outlined that the NHS Commissioning Board will have a special remit with regards to maternity services, at least in part as a means of ensuring integration of maternity and neonatal services:

‘While responsibility for commissioning responsibility should sit with GP consortia, we will expect the Board to give particular focus to promoting quality improvement and extending choice to pregnant women... The Department considers that this approach is most likely to deliver improvement and a joined-up approach to local services for women and newborn babies.’

5.2 Bliss believes it is vitally important that there is improved integration between maternity and neonatal services to ensure a smooth pathway of care for women who experience complications in their pregnancy resulting in their babies being admitted to neonatal services. Better integration will also help ensure more effective planning of services and the best possible use of resources. We therefore welcome the remit given to the NHS Commissioning Board in regard to this issue. However this responsibility should be outlined in the Bill to ensure that the Board see it as the important duty it is and do not deem it inferior to other duties set out under Clause 19.

5.3 Recommendation: The NHS Commissioning Board’s responsibility to promote quality improvement in maternity should be outlined in the Bill, potentially through the addition of a new section under Clause 19, after New Section 13L, entitled General duties of the Board .

6. Other issues surrounding the Bill - Transition period

6.1 Neonatal services in England are organised into regional neonatal managed clinical networks. Neonatal networks, which first started being introduced across the country in 2003, have had a positive impact on babies’ care and the overall experience of whole families by:

· developing local strategies for service improvement

· providing an important performance management role and effective forum for dialogue and cooperation between providers and commissioners

· improving communication between units, coordination of care and the flow of babies into the right level of hospital unit at the right time

· reducing the need for babies and expectant mothers to be transferred long distances to find a unit with spare capacity [3] . This reduces the risks faced by very fragile babies in undergoing these unnecessary transfers and vastly improving the experience of families.

6.2 The operational costs of neonatal networks are at present generally funded jointly either by a number of PCTs across a region, or directly through the regional specialised commissioning groups or strategic health authorities. Bliss is concerned that unless sufficiently robust transitional arrangements are put in place with immediate effect to ensure neonatal networks are maintained, the support structures that underpin these networks could be undermined in the drive to cut management costs. We are extremely concerned about the impact such ill thought through cuts could have on the care of babies and families, through the loss of expertise that could result from this situation.

6.3 Recommendation: We are urging the Government to ensure arrangements are in place to maintain neonatal networks in the transitional period.

7. Background information on neonatal care

7.1 Around 70,000 babies are admitted to neonatal care in England every year because they are born too soon, too small, or too sick. Neonatal care is a specialist branch of medicine, and includes three categories of care. These are:

· Special care – the least intensive level of care and most common. This includes care such as monitoring of a baby’s breathing and/or heart rate, provision of ultra violet light for jaundice and so on.

· High dependency care – this level of care is for babies weighing less than 1,000g, or who are receiving help with breathing via continuous positive airway pressure or intravenous feeding but who do not require intensive care (see below).

· Intensive care – highly specialised care for the most seriously ill babies who will often be on a ventilator or need constant care to keep them alive.

7.2 These three categories of care are delivered across three levels of neonatal units:

· Special care baby units – provide special care for their own populations. May in some areas, subject to local agreement, provide some high dependency care to babies.

· Local neonatal units – provide all categories of neonatal care, including short term intensive care, however would transfer babies requiring complex or longer term neonatal care to neonatal intensive care units.

· Neonatal intensive care units – provide the most specialist care for the sickest babies across their network, also provide the whole range of neonatal care for their local population.

7.3 The 178 neonatal units in England are arranged into 23 neonatal networks, each network covering units of the various levels across a region.

7.4 Neonatal care is one of the few disciplines where the care of the patient (the baby) is inextricably linked to the wider family. When planning neonatal services, integration and coordination with a range of other complementary disciplines, in particular maternity services, is crucial.

7.5 Key standard frameworks and policy documents relating to neonatal services are:

Quality Standard for Specialist Neonatal Care, NICE (Oct 2010)

Service Standards for Hospitals Providing Neonatal Care (3rd edition), British Association of Perinatal Medicine (Aug 2010)

Toolkit for High Quality Services, NHS & Department of Health (Nov 2009)

February 2011