Health and Social Care Bill

Memorandum submitted by Bliss (HSR 01)

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 Bliss welcomes the Government’s response to the listening exercise, particularly the fact that clinical networks will be retained and play a key role in providing expert advice to commissioners. However we are seeking clarification about the following issues:

· The timescale when the NHS Commissioning Board will start to host neonatal networks and what interim arrangements will be in place to secure existing neonatal networks until this time.

· What the review of clinical networks will involve.

· What further guidance will be provided to the NHS on the relationship between neonatal and maternity networks.

3. Funding and support for neonatal managed clinical networks

3.1 Bliss welcomes the fact that the Government‘s response to the listening exercise makes clear that clinical networks will be retained. We are particularly pleased to see that networks will be hosted by the NHS Commissioning Board, as we recommended. However, we are seeking clarification about the timescale by which this will happen, and the Secretary of State’s assurances that interim arrangements will be made to secure existing neonatal networks, and their funding, while these new structures are being set up.

3.2 With the establishment of PCT clusters and other changes that have been occurring to local NHS structures in some areas over recent months, we have found that the bodies supporting neonatal networks are already beginning to undergo significant change. For example in London, due to a major management reduction programme across the capital, the management team responsible for the pan London perinatal network has been dissolved. Our key concern is the real sense of uncertainty facing many neonatal networks in the short term as NHS bodies continue to merge and reform before the NHS Commissioning Board is even operational.

3.3 The NHS Future Forum called for further work to be done to define clinical networks and review their range, function and effectiveness. While we agree that there are important lessons to be learnt about how different types of networks can be made as effective as possible, we are concerned that while this review is being conducted neonatal networks continue to face uncertainty about their funding and role.

3.4 We are also seeking assurances that this review of networks will make clear what patient and public involvement arrangements should be in place for these networks, given the Government’s commitment to ‘no decision about me without me’.

4. Maternity and neonatal networks

4.1 We are also seeking the Secretary of State’s clarification on how maternity networks, recommended in the White Paper, will work with neonatal networks to ensure the best possible outcomes for women and babies whether they receive care in mainstream maternity services or have need for a high level of intervention during pregnancy, birth and neonatal care. We believe that it is essential that further guidance is provided to the NHS on this matter to ensure that these two forms of networks complement one another as services continue to evolve. We would be keen to work with the Government on developing this guidance. Please find a position paper attached to this submission setting out our recommendations on how maternity and neonatal networks should operate in conjunction with each other.

Appendix 1: Bliss recommendations on the future of neonatal networks

1. Introduction

One in nine babies born in England are admitted to neonatal care because they are born too soon, too small or too sick. Bliss is the UK charity dedicated to improving the care that these babies receive.

Neonatal services are currently organised into 23 managed clinical networks across England. These neonatal networks coordinate services for premature and sick babies across a group of hospital units in a region. Each network includes at least one lead centre providing neonatal intensive care for babies born within the network region. Working with the lead centre are a number of both special care baby units providing lower intensity care and local neonatal units providing special care, high dependency and also short term intensive care for their local populations. The organisation of care into neonatal networks aims to ensure that babies receive the right care, in the right place, and at the right time, by appropriately experienced specialist health professionals, as close to home as possible.

In February 2011 Bliss conducted an audit of neonatal networks to identify their current priorities, clarify their existing funding arrangements and develop an understanding of their views on how the proposed NHS reforms will impact on their work. Responses were received from ten networks, detailing key achievements made since their establishment and concerns about whether their important role would be continued under the proposed reforms. This paper draws on the findings of this audit and a review of published standards, and sets out a number of key recommendations about how Bliss believes the Government’s proposed NHS reforms should be modified to improve outcomes for babies born premature and sick and their families.

2. Background and development of networks

The organisation of services for premature and sick babies into managed clinical networks was recommended by a Department of Health expert working group review of neonatal care in 2003 [1] . The key issue that this reorganisation was set up to address was the number of women and babies inappropriately transferred long distances for their care due to poor planning and a lack of capacity within local services.

The reorganisation was based on evidence from other countries that networked models of neonatal care produced the best outcomes for babies, with intensive care for the sickest babies being provided in specialist centres by appropriately skilled and experienced professionals. However the 2003 review rejected a major centralisation of neonatal intensive care services due to the considerable length of time that many babies needed to stay in hospital, when compared with paediatric care, and the burden that centralisation would therefore have on the babies’ families.

Neonatal networks are also a fundamental principle of subsequent key policy documents, the NHS/Department of Health Toolkit for High Quality Services (Toolkit) and NICE Quality Standards for Specialist Neonatal Care. As Principle 1 of the Toolkit states:

"Neonatal care is a high-cost, low-throughput service in which expertise is a key determinant of the quality of outcome for the patient and the family. In order to provide equity of access to care of the highest standard, which produces the optimal outcomes, neonatal care must be organised in a managed clinical network to ensure appropriate expert treatment. [2] "

The National Service Framework for Children, Young People and Maternity Services, published in 2004, first introduced the idea of managed maternity and neonatal care networks with the aim of integrating the care pathway from pregnancy to birth and neonatal care. [3] Maternity and neonatal networks were again endorsed by the Royal College of Obstetricians and Gynaecologists’ 2008 standards for maternity care [4] .

The White Paper Equity and Excellence: Liberating the NHS again introduced maternity networks, however in this instance with the stated purpose of extending choice within maternity care.

Neonatal networks started being established across the country following the 2003 review. These took on a variety of forms until 2010, when the last network, Northern, was formally established as a managed clinical network with a formal governance structure and network manager in post. Maternity networks are also in place across some parts of the country, taking a variety of forms. However, with some notable exceptions, joint maternity and neonatal networks have not been widely established.

3. Integration across maternity, neonatal and paediatric services

"Implementation of newborn care pathways is intrinsically linked to maternity capacity. Whilst accepting that the majority of maternity care is about normal mothers and babies, it is vital that consideration is given to ensuring capacity is created for the transfer of mothers at high risk if delivering preterm infants. This does not appear to be addressed within the white paper aspiration for maternity networks which seems to be more about parental choice than ensuring that providers work together to provide for the high risk population of mothers and babies."(Network Manager)

"I feel very strongly that maternity networks need to have a clear link with/ or be part of the existing neonatal networks to ensure that we are all travelling in a common direction. It seems inconceivable that the two could function separately and potentially be addressing the same issues in entirely different ways." (Network Manager)

Bliss believes it is essential that there is close working across maternity, neonatal and paediatric care to ensure that services are joined up around the needs of women, babies and children. This is particularly important in light of the decision to commission neonatal services centrally by the NHS Commissioning Board, while maternity and paediatric services are commissioned locally by GP consortia. We strongly support the decision to commission all three levels of neonatal care together by the NHS Commissioning Board, putting an end to the fragmentation that exists in many areas under the current system where special care was commissioned separately from high dependency and intensive care. However it is essential that the new framework builds in strong links across the pathway from pre-pregnancy care, to early years and beyond.

There are a number of ways in which networks could be set up to provide this integration across maternity, neonatal and paediatric care, including:

Option 1: Existing neonatal and maternity networks to merge to form perinatal networks

Option 2: Separate maternity and neonatal networks continue to exist, however both of the network boards to include representation from the other board, as is the case currently in Greater Manchester

Option 3: Separate maternity and neonatal networks continue to exist, however with the creation of an additional overarching perinatal network set up to complement and bring together the separate networks, as is the case in the West Midlands.

However, whichever of these model is adopted the objectives must include improving outcomes for babies admitted to neonatal care, improving maternal outcomes as well as promoting choice in maternity care. It is vitally important that the focus neonatal networks have brought to the improvement of services for babies born premature and sick over the last decade is not lost. Networks have played a key role in developing collaborative working and promoting high quality care through focusing clinical leadership.

 Whichever network model is adopted, it is essential that links with paediatric services are also made to ensure there is continuity of care for babies born premature and sick beyond discharge and as they grow up. As one network representative commented:

"at a local level there is concern that responsibilities for the 0-2 years pathway will be separated from the 0-19 (years) pathway."

To help ensure the above objectives are met, we believe that the governance arrangements for the networks, whichever model is adopted, must include the following:

· Lay representation from parents with recent experience of having babies cared for in neonatal services and mainstream maternity services

· Representatives from neonatal nursing and medicine, obstetrics and midwifery and paediatrics

· Commissioner representation from both NHS Commissioning Board and GP consortia

· Public Health Service representative

We also believe that networks should promote strong links with:

· Health and Wellbeing Boards

· HealthWatch

· Maternity Service Liaison Committees

4. Competition versus coordination

Networks have been defined as:

"A linked group of health professionals and organisations from primary, secondary and tertiary care, working in a coordinated way that is not constrained by organisational or professional boundaries to ensure equitable provision of high quality, clinically effective care... The emphasis... shifts from buildings and organisations towards services and patients. [5] "

It is therefore a central aim of managed clinical networks to engender collaboration across organisational boundaries. However, as a consequence of the emphasis placed on increased competition between provider organisations in the proposed NHS reforms, concerns have been raised about the future of networks and the role they play in promoting this cross-organisational collaboration.

Under the proposed reforms, competition and choice are seen as key drivers of service improvement. However, neonatal care is a highly specialist emergency service, in which ensuring babies receive the right care in the right place is central to achieving the best possible outcomes. This is potentially inconsistent with full parental choice of where their baby is cared for. It is the co-ordination of care across different NHS organisations, rather than competition between them, that is vital to the provision of high quality services for premature and sick babies.

We strongly believe that this form of competition and choice is not an appropriate driver for service improvement within the context of neonatal care. However we believe other measures of quality, for example outcomes of care and satisfaction with services are key to driving up standards. In addition, other incentives and levers, such as Commissioning for Quality and Innovation (CQUIN) payments and Quality, Innovation, Productivity and Prevention (QUIPP) should be used to encourage service improvement.

While Bliss does not believe that choice should be a key driver of neonatal services, we do support the intention set out in the White Paper to "extend maternity choice and help make safe, informed choices throughout pregnancy and in childbirth a reality – recognising that not all choices will be safe or appropriate for all women. [6] " However, the emphasis on women’s ability to make an informed choice is an important one, and we believe the information women receive during pregnancy about their care options must be improved.

We believe that maternity or perinatal networks must cover a certain population size to provide women with the option of a number of different care providers. We therefore believe that a number of GP consortia should come together under one maternity network. In addition, as increasing maternity choice will pose a considerable challenge to commissioners, we support the Royal College of Midwives’ recommendation to limit women’s choice to the maternity network area in which they live or work [7] .

5. Networks’ relationship to providers and commissioner bodies

"The strength of networks is in their neutrality as an ‘honest agent’." (Network Director)

"The Managed Clinical Networks do not fit easily with the commissioner/provider divide since both are represented on the Board. In my view that is a great strength... The regular discussions between commissioners and providers at the Network Board meetings are constructive and enable an understanding of the issues related to delivering the service from both perspectives." (Network Manager)

Neonatal networks as they are currently established play an important role in bringing provider and commissioner bodies together. The Toolkit sets out this bridging role provided by networks:

"The managed neonatal network has a dual role within the commissioner-provider relationship, both advising commissioners and supporting co-ordination and benchmarking/audit throughout the patient pathway." [8]

Respondents to Bliss’ audit of neonatal networks highly valued this dialogue between commissioners and providers which networks facilitated. A number of respondents spoke about the importance of networks as a neutral arbiter between the two functions.

We urge the Government to ensure that the new NHS structures being introduced guarantee the continuation of this important dialogue and joint working between commissioners and providers of maternity and neonatal services. We believe this can be achieved through commissioner representation on networks and hosting of neonatal and maternity networks by commissioner bodies.

6. Networks’ funding arrangements

"There is concern that (provider led networks) will lead to ‘network capture’ by the larger tertiary units and will result in smaller units feeling vulnerable and without a voice. When these roles within some networks have been placed in the provider arm the network management often find them drawn into managing and maintaining Trust corporate business, making them no longer impartial." (Network Director)

The experience gained from the establishment of neonatal networks is that the investment of resources and time into their management and leadership has been essential to their success. Where informal networks of individual professionals and providers have been set up, for example some maternity networks, progress has been slow. We therefore urge the Government to ensure that maternity and neonatal networks, or perinatal networks, are sufficiently resourced and supported to operate as managed clinical networks, rather than existing as informal networks. We believe that a network manager, the dedicated time of a lead clinician, lead nurse, as well as some clerical support and operating costs are vital for the effective running of a network.

Current funding arrangements for neonatal networks vary across the county. Funding for a number of networks comes from Specialised Commissioning Groups and others from PCTs. In some networks funding is split between PCTs and NHS Trusts. Respondents to Bliss’ audit perceived the hosting of neonatal networks under the current system by more ‘neutral’ PCTs and SCGs as key to the co-operation of the different provider Trusts.

The White Paper suggests that maternity networks should be provider-led. However we believe it is essential for the effective working of the service that one provider organisation is not allowed to dominate. We recommend that an outside organisation, other than the NHS Trusts responsible for providing care, is involved in the running of the network, including for example holding the networks’ funds and chairing the network. We believe that the NHS Commissioning Board must have a role in ensuring that the different providers of neonatal and maternity services are on an equal footing in relation to the network’s decision making. As mentioned above, we believe the NHS Commissioning Board and GP consortia should host the networks.

The social enterprise model has been suggested for the future of cancer networks, however there are no such organisations currently operating in neonatal services, and as such would likely experience difficulties in gaining the support and confidence of neonatal care providers.

We therefore recommend that the NHS Commissioning Board and GP consortia commit to funding neonatal and maternity networks, or perinatal networks, by contracting with them to provide expertise and commissioning support.

7. Summary of recommendations

1. It is essential that the new NHS structures ensure strong links across the pathway from pre-pregnancy care, to early years and beyond. We believe this can be achieved through joint working between maternity and neonatal networks, or through the creation of joint perinatal networks.

2. Whichever network model is implemented locally, the objectives of co-existing maternity and neonatal networks or joint perinatal networks must be to improve outcomes for babies admitted to neonatal care and improve maternal outcomes – not just to promote choice in maternity care.

3. We do not believe that competition and choice are appropriate drivers of service improvement within the context of neonatal care. However other measures of quality, for example outcomes and satisfaction with services are essential for driving up standards.

4. We urge the Government to ensure that the new NHS structures guarantee the continued dialogue between commissioners and providers of maternity and neonatal services. We believe this can be achieved through commissioner representation on networks and hosting of neonatal and maternity networks, or perinatal networks, by commissioner bodies.

5. It is essential that parents with direct and recent experience of mainstream maternity services, and parents who have experienced complications in their pregnancies and had babies to neonatal care are represented on the networks’ governance boards. Networks covering both maternity and neonatal services must include representation from both groups of parents.

6. Maternity, neonatal and perinatal networks must be sufficiently resourced and supported to operate effectively as managed clinical networks, rather than existing as informal networks.

7. The NHS Commissioning Board must have a role in ensuring the different providers of neonatal and maternity services within a network region are on an equal footing. We also recommend that the NHS Commissioning Board and GP consortia fund the running costs these networks, by contracting with them to provide expertise and commissioning support.

June 2011