Shaping the new NHS in England: A guide for Bliss campaigners

Shaping the new NHS in England: A guide for Bliss campaigners

1

What this pack includes Contents Introduction

p3

How to use this guide

p4

What was the NHS like before the reforms?

p5

The new NHS

p6

The new NHS structure and how it relates to neonatal services

p8

Influencing the new NHS

p9

NHS England

p9

NHS England’s Area Teams

p11

Clinical networks

p13

Local Education and Training Boards (LETBs)

p15

NHS Trusts

p16

Healthwatch

p18

Tools at your fingertip

Tool A – Template letter to your Area Team

p19

Tool B – Template letter to your LETB

p20

Useful Websites Contact us

p21 p22

2

Introduction

This pack has been produced to brief Bliss campaigners on the NHS reforms which took effect from April 2013. It outlines the key bodies that make decisions about neonatal services, and recommends ways in which campaigners can influence these structures.

Key points • The NHS reforms, as laid out in the Health and Social Care Act 2012, came into effect on 1 April 2013.

• NHS England is now responsible for all health services; it buys some services directly, including neonatal care and it has oversight of others.

• A group of specialists in neonatal care, including parents, will advise NHS England on standards.

This will be called the Clinical Reference Group.

• NHS England buys services through 27 Area Teams. There are ten Area Teams that are responsible for neonatal care.

• Trusts (one or more hospitals) will be responsible for the day-to-day running of neonatal care.

• Trusts will work together through neonatal Operational Delivery Networks (ODNs) to make sure all babies receive the right care in the right place.

• Local Education and Training Boards (LETBs) will plan education and training locally for neonatal staff.

• Healthwatch will offer advice on local health and social care services as well as represent patients’ views.

How to influence the above NHS bodies You can write to your Area Team if you are concerned that your local Trust is failing to meet standards.

You can write to LETBs to ask them about their plans to improve nursing standards on neonatal units.

You can get involved with your local Healthwatch.

3

How to use this guide

Star rating

Tools at your fingertips

How to influence new NHS bodies

We have given the new NHS bodies a star rating (three being the highest) to indicate who best to contact in your first steps to campaigning for improved neonatal care.

You will find some resources at the back of this pack which will help you start campaigning. The resources include template letters and useful contact information.

The ‘How to influence’ tools give information on how you can influence each new NHS body.

4

What was the NHS like before the reforms?

Before the reforms, the commissioning of neonatal services took place on a local basis and was shared between different bodies. The delivery of services was coordinated by neonatal networks.

Commissioning What is commissioning?

Commissioning involves buying in services from a range of health service providers (including GPs, dentists, community pharmacists, NHS and private hospitals, and voluntary sector organisations) to meet the health needs of local people, and monitoring how well they are delivered.

Previously, there was a confusing mix of local and regional bodies involved in commissioning different levels of neonatal care. This meant, due to the frequently fluctuating condition of many premature and sick babies, that a baby’s care could one day be planned by a Primary Care Trust - the bodies previously responsible for commissioning most local services - and the next by a different set of regional planners Specialised Commissioning Groups.

Networks Neonatal networks were first set up in England a decade ago, bringing together groups of neighbouring hospitals to ensure the sickest babies had access to services in their region with the most specialist expertise and experience while babies with fewer complications could be cared for in lower intensity hospitals closer to home.

There were 23 neonatal networks across England, which were mainly funded and based within Primary Care Trusts. While there were variations in the level of funding they received, most were relatively well supported by a small management team which coordinated their work.

5

The new NHS? The NHS reforms which came into effect from April 2013 mean a number of things for the future of neonatal services. The main bodies relevant to neonatal services are outlined below.

NHS England is a new national body overseeing the NHS. Its role includes supporting, developing and holding to account commissioners of local services (clinical commissioning groups). It is also responsible for directly commissioning specialised services, covering conditions for which there is a relatively small patient population and a high cost involved in their treatment. This includes all three levels of neonatal care. It has 27 Area Teams across the country to support the delivery of its functions and ten of these have responsibility for commissioning specialised services, including neonatal care.

Clinical Reference Groups (CRGs) are condition-specific advisory groups that sit within NHS

England’s new commissioning structure for specialised services. They are mainly made up of clinicians in that specialty. They have a national role in developing service specifications, policies, and service improvement schemes. There are four places on each CRG for patients and carer members, to provide input on the needs of those using the service.

Clinical Networks are intended to improve health services for specific patient groups or conditions, there are two main types of clinical networks:

• Strategic Clinical Networks (SCNs) are hosted and funded by NHS England and cover conditions or patient groups where improvements can be made through an integrated, whole system approach.

The conditions or patient groups chosen for the first SCNs are: cancer, cardiovascular disease (including cardiac, stroke, diabetes and renal disease), maternity and children’s services and mental health, dementia and neurological conditions.

• Operational Delivery Networks (ODNs) are hosted by the lead provider (Trusts). There will be ODNs for neonatal critical care, adult critical care, burns and trauma.

Health Education England (HEE) and Local Education and Training Boards (LETBs) are

responsible for the education and training of NHS staff. HEE provides national leadership, oversight of the planning and development of the health workforce and is responsible for allocating education and training resources. Thirteen LETBs work with HEE at a local level.

Foundation Trusts will be the norm by 2014 with all hospital Trusts (the organisations that run

hospitals) expected to become Foundation Trusts or join other Foundation Trusts through mergers or takeovers. Foundation Trusts have greater freedom to decide, with their governors and members, their own strategy and the way services are run.

6

Clinical Senates will provide strategic clinical advice and leadership across a geographical area.

They are advisory bodies with no executive authority or legal obligations and therefore they will need to work collaboratively with commissioning organisations. There are 12 senates across England. Patients, carers and members of the public will have the opportunity to engage with Senates’ work.

Healthwatch is replacing Local Involvement Networks (LINks), as a new independent consumer champion that gathers and represents the views of patients and the public. Local authorities are responsible for commissioning local Healthwatch to:

• Represent the views of people who use services, carers and the public on the Health and Wellbeing Boards set up by local authorities.

• Provide a complaints advocacy service to support people who make a complaint about services • Report concerns about the quality of healthcare to Healthwatch England, which can then recommend that the Care Quality Commission take action.

Health and Wellbeing Boards (HWBs) will bring together clinical commissioning groups and

councils to develop a shared understanding of the health and wellbeing needs of the community. They are responsible for analysing the needs of the local population and producing a wellbeing strategy.

HWBs will carry out the Joint Strategic Needs Assessment (JSNA), which will inform commissioning on the health and wellbeing needs of the local community.

Clinical Commissioning Groups (CCGs) are groups of GPs, other medical professionals and

lay members that will be responsible for commissioning local health services, including maternal and paediatric services, taking over this role from Primary Care Trusts (PCTs). Each GP practice will belong to a CCG. They will make important decisions about what services are provided by which organisations and to what standards CCGs will be supported and held to account by NHS England.

The Department of Health (DH) is the government department responsible for leading, shaping

and funding health and care in England. The Department has oversight over the whole health and care system.

The Care Quality Commission (CQC) is an independent body set up to monitor and inspect

all health and adult social care services in England. Many of these services are provided by the NHS, local authorities, private companies or voluntary organisations. The CQC’s role is to also safeguard the welfare of people detained under the Mental Health Act. Overall the, CQC is there to ensure that standards of quality and safety of care in hospitals and other similar services it is responsible for are being met.

7

The new NHS structure and how it relates to neonatal services

national

Secretary of State (supported by the Department of Health) Has ultimate responsibility for providing a health service in England

NHS England

Health Education England

Oversees the NHS and is responsible for commissioning all specialised services, including neonatal care

Oversees national training and education system

Maternity and Children’s Strategic Clinical Networks Bring together staff to plan improvement programmes for maternity and children’s services

The ten Area Teams with specialist commissioning responsibilities negotiate and monitor contracts for neonatal services with Trusts

Neonatal Operational Delivery Networks

Local Education and Training Boards (LETB)

Responsible for coordinating neonatal care across the area

Responsible for coordinating the education and training of health workers like nurses

Responsible for raising concerns about services.

It is the patient/public voice and champion

NHS Trusts Responsible for running hospitals and providing care

local

Healthwatch

reigional

Area Teams

8

Influencing the new NHS NHS England NHS England is an independent statutory body, free to determine its own organisational shape, structure and ways of working; accountable to the Secretary of State via an annual mandate. Its main role and responsibilities are to: • Provide national leadership for improving outcomes and driving up the quality of care.

• Oversee the operation of, and allocate resources to CCGs. • Directly commission primary care and specialised services.

It will have overall responsibility for a budget of £95bn, of which it will allocate £65bn directly to CCGs. NHS England will have a national role for commissioning specialised services including neonatal care.

It will work with clinicians, patients, carers and others at a national level through CRGs to determine the outcomes expected for specialised services. The neonatal critical care CRG is responsible for designing the national service specification (see page 12 for more information) which outlines each of the service components that Trusts must have in place, and the standards that they must work to, to ensure safe and effective care.

To make sure services are delivered in accordance with the national service specification, ten of the Area Teams across England have responsibility for setting up and overseeing contracts for specialised services with local providers based on the national service specifications (see page 10 for more information).

The setting of national policy for the commissioning of neonatal care NHS England sets out the service specification, informed by the advice of the neonatal critical care CRG, for neonatal services.

It will also monitor contracts with hospital Trusts through Area Teams.

Bliss and three other parent representatives currently sit on the neonatal critical care CRG. This is an opportunity for parents to share their experiences and feedback on the service to help improve outcomes.

9

NHS England’s regional and local structure NHS England operates at a national, regional and local level. The central office, or ‘corporate base’, is in Leeds, with an additional London presence. There are four Regions and a total of 27 Area Teams.

The arrows indicate the ten Area Teams with responsibility for specialised commissioning (nb - all three Area Teams in London have responsibility for specialised service contracts but this is administered at a regional level).

South Yorkshire

Cumbria, Northumberland,

and

Tyne & Wear

Bassetlaw

Region: NHS North of England

Leicestershire

Birmingham, Cheshire, Warrington

Solihull and the

and

Black Coutry

Lincolnshire

and Wirral

Region: NHS Midlands and East of England

Bristol, N Somerset,

Surrey

Somerset and

and

S Gloucestershire

Sussex East Anglia

Region: NHS South of England

Region: NHS London Wessex

10

NHS England’s Area Teams Ten of NHS England’s Area Teams have responsibility for overseeing the commissioning of specialised services. They play the important role of setting up and monitoring contracts with hospital Trusts for the provision of services which will deliver against the standards set out in the national service specification for neonatal critical care (see the box on page 12 for more information). If Trusts are unable to meet the service specification for neonatal critical care they have to provide a derogation plan. This will explain what action they will take to ensure they meet the service specification in the future.

Their role also involves engaging with patients, carers and the public. Some Area Teams may develop patient participation and experience groups to gather local people’s views on services, which campaigners may be interested in finding out about.

Area Teams with specialised services commissioning responsibility also have links to neonatal operational delivery networks and maternity and children’s strategic clinical networks.

How to influence Area Teams

Tools at your fingertips

The ten Area Teams with specialised commissioning responsibilities will play a key role in the provision of neonatal services.

At the back of this guide you can find a template letter (Tool A) that you might want to personalise and send to your Area Team.

Get in touch with the Campaigns and Policy Team for the contact details of your Area Team Head of Specialised Commissioning.

Campaigners can write to the Head of Specialised Commissioning in their relevant Area Team if they are concerned their Trust is not meeting the service specification for neonatal care.

11

National service specification for neonatal critical care The service specification for neonatal critical care is the standard NHS England expects all neonatal services to meet. This is closely based on the national standards that have already been agreed and approved - such as the Department of Health’s Toolkit for High Quality Neonatal Services, the National Institute for Clinical Excellence’s Quality Standard for Neonatal Care and The British Association of Perinatal Medicine’s Standards for Hospitals Providing Neonatal Intensive and High Dependency Care.

The service specification is drawn up and regularly reviewed by the neonatal critical care CRG. It is then put out for public consultation, after which it must be approved by the senior governance structures within NHS England.

The following are some of the standards that Trusts must meet for neonatal critical care: • Nurse to baby ratios must be 1:1 for intensive, 1:2 for high dependency, and 1:4 for special care.

• Staffing in each unit must include a dedicated Lead Nurse, dedicated Lead consultant, educator, shift co-ordinator and discharge planning/outreach co-ordinator.

• A minimum of 70 per cent of nurses and midwifes must hold a specialist neonatal qualification.

• Each unit must deliver a family-centred care approach, with sufficient emotional and practical support for parents and families.

The service specification guides the commissioning and monitoring of neonatal services by Area Teams. Where Trusts are unable to meet the standard of care set out in the service specification they will have to produce a derogation plan which must outline: • What aspects of the service specification they cannot currently meet.

• What arrangements have been put in place in the interim to ensure services are safe.

• What plans they have for meeting the service specification in the future.

12

Clinical networks Clinical networks are groups bringing together a range of experts, professionals and others to identify ways services can be improved.

Operational delivery networks (ODNs) ODNs coordinate patient pathways between different Trusts. Neonatal ODNs ensure the sickest babies can access the services in their region with the most specialist expertise and experience while babies with fewer complications can be cared for in lower intensity hospitals closer to home.

ODNs are hosted by a lead Trust within each network. That Trust is responsible for managing the network’s funding and employing the network’s management team.

There are also ODNS for: • Adult critical care • Burns • Trauma

How to influence ODNs Neonatal ODNs will lead on the day-to-day coordination of neonatal care across the network’s Trusts.

By meeting with your local ODN network manager on a regular basis and forming a positive relationship with them, you can work to identify any areas of concern and to help achieve change. You can also brief ODN’s on our new campaigns and seek their support.

Contact Bliss for information on your local ODN.

13

Strategic clinical networks (SCNs) There are four SCNs: 1. Cancer 2. Cardiovascular disease (incorporating cardiac, stroke, diabetes and renal disease) 3. Maternity and children 4. Mental health, dementia and neurological conditions SCNs are hosted by NHS England and will be established for up to five years in the first instance.

Maternity and Children’s SCNs may choose to cover some neonatal service issues in their programmes of work, but this will be down to individual networks.

Location of SCNs

Greater Manchester, Lancashire and

North East, North Cumbria and the Hambledon and Richmondshire districts of North Yorks

Yorkshire and The Humber

south Cumbria

Cheshire East Midlands

and Mersey

NHS England

West Midlands

East of England

London

Thames Valley

South East Coast

South West Wessex South Yorkshire & Bassetlaw

14

Local Education and Training Boards (LETBs) LETBs will have specific duties and responsibilities in helping to plan education and training for NHS staff, including neonatal units. LETBs will be required to bring key stakeholders together to develop skills and development strategies that meet the needs of providers, reflect commissioning plans and take into account the views of patients, communities and staff.

An annual strategic education operating framework will provide the structure within which LETBs will develop their plans. It will include national outcomes for LETBs to deliver against in workforce planning, education and training. LETBs will be required to work closely with education providers, commissioners and those responsible for research and innovation.

LETBs will be accountable to Health Education England (HEE) for managing the funding they receive for education and training.

There will be 13 LETBs around the country: • • • • • • • • • • • • •

Health Education East Midlands Health Education East of England Health Education Yorkshire and the Humber Health Education Wessex Health Education Thames Valley Health Education North West London Health Education South London Health Education North Central and East London Health Education Kent, Surrey and Sussex Health Education North East Health Education North West Health Education West Midlands Health Education South West

How to influence LETBs

Tools at your fingertips

LETBs will play a crucial role in planning training and education for staff in the NHS, which includes nurses working in neonatal units.

See Tool B for a template letter you can personalise and send to your local LETB asking about their plans for the training of staff in your local Trust.

Campaigners can write to or meet with LETBs to find out what their plans are to train more staff and ensure Trusts are meeting the staffing standards set out in the national service specification for neonatal care.

15

NHS Trusts NHS Trusts are the organisations that run all hospitals, including those providing neonatal care.

One of the core aims of NHS England is for greater national consistency around patient access, care and treatment between different providers and different parts of the country. Trusts must deliver on core national standards, as set out in the service specification, which defines how they can demonstrate safe and effective care for patients. Where Trusts are not meeting these standards they must provide derogation plans to their Area Teams setting out the timeframes and plans for meeting them.

Most NHS Trusts must become Foundation Trusts by 2014. This will allow them to become more autonomous from central government, and means that local people, patients and staff can have a greater say in their day-to-day management.

Some Trusts will also now act as the ‘host provider’ to ODNs, which means that they will be responsible for employing the network’s staff and looking after the network budget.

How to influence Trusts By working with your local Trust Chief Executive and developing relationships with key staff you can push to make sure that your Trust meets the service specification for neonatal critical care and if it fails to, has an appropriate derogation plan in place.

Find details of your local Trust here: www.nhs.uk

16

Reorganisation of neonatal services What is happening?

In some areas, the NHS may choose to reorganise where and how services are provided. This could mean a number of changes to neonatal services, including the most specialist care moving to regional specialist centres. Trusts might choose to reorganise services to improve the quality of care and save costs. Commissioners are obliged to undertake public consultations on any reconfiguration being proposed, which will allow campaigners an opportunity to influence the proposals.

What Bliss believes Bliss supports reorganisation of neonatal services (also termed reconfiguration or centralisation) where there is strong evidence that the outcomes for premature and sick babies will be improved.

We are looking to ensure that any reconfiguration has local clinical support, and we are also committed to ensuring that any reorganisation of neonatal services prioritises the safety and highest level of care for babies. This means that high quality provision must be available for all critically ill babies, including the correct levels of specialist staff, appropriate nurse-to-baby ratios and manageable cot occupancy levels.

The welfare of the family is key in any changes to services. The correct support for families must be provided, this includes overnight accommodation and kitchen facilities, access to hardship funds and emotional support to ensure their needs are met. Travel and distance must also be taken into account, and financial support provided to families wherever possible, to ensure the best outcomes for babies.

What you can do 1. If services in your local area are being reorganised campaigners might be interested in finding out about the impact of this on their local neonatal unit.

In many cases there will be a consultation period, where patients, carers and the public will be asked their views on proposed changes. We strongly urge you to be involved in this period through attending meetings and responding to any written consultations.

Below are some questions you could ask: • What are the proposed clinical benefits of reorganising (neonatal) services, and what are the benefits to babies and mums?

• What support will there be for families who will need to travel further?

• Will there be appropriate staffing levels in units?

• How will the standards in the Toolkit for High-Quality Neonatal Services be met?

• What plans are there for family-centred care in the unit?

2. Campaigners can set up meetings with their MPs and work with them to approach Trust Chief Executives to find out about plans in more detail and raise concerns.

17

Healthwatch Healthwatch is the consumer champion for health and social care, working at both a national and local level.

Healthwatch England Healthwatch England will provide leadership, guidance and support to local Healthwatch organisations.

It will share what people are telling it about health and social care services with the Secretary of State for Health and NHS England.

Local Healthwatch Local Healthwatch will offer advice on local health and social care services as well as represent patients’ views. There will be a local Healthwatch for each local authority in England.

Local Healthwatch will also be members of the Health and Wellbeing Board for their area which will look at local health and social care needs and make recommendations as to how these can best be met.

How to influence Healthwatch Healthwatch will seek to engage the public and patient views on the effectiveness of services.

Campaigners can register to receive information from their local Healthwatch and you can approach them when you have any concerns about the quality of a service.

You can find your local Healthwatch at www.healthwatch.co.uk/find-local-healthwatch

18

Tool A – Template letter to your Area Team About this tool

Below is a template letter to modify and send to your Area Team if you are concerned about standards on your local unit.

Please let us know if you are planning to write to your Area Team and be sure to send us a copy of any responses you receive.

[Insert name] Head of Specialised Services [Area Team and address]

Improving care for critically ill babies

Dear (insert name) I am writing to you regarding [insert name of Trust] Trust to ask for your support in improving services for babies born too soon, too sick or too small. I am a parent of a premature/sick baby who was born at [add number of weeks/or amend to reflect your own personal experience]. I am concerned about my local Trust falling short of meeting neonatal standards.

One in nine babies in [town/city] will be admitted to specialist hospital care in the first minutes, hours or days of life. However, research published by Bliss, the special care baby charity, shows that many babies are not getting the care they need and deserve as services are stretched to the limit.

NHS England has set out a national service specification detailing the standard of care that hospitals providing neonatal services should be meeting to ensure safe and effective care for babies. I am concerned that [insert name] Trust is not fully meeting the service specification for neonatal critical care.

I am therefore writing to ask you to confirm where the Trust is with meeting these standards. In particular, if they are not currently meeting the service specification I would be grateful if you could provide me with a copy of their derogation plan.

I look forward to hearing from you [Signature] [Name]

19

Tool B – Template letter to your regional LETBs About this tool

Below is a template letter to modify and send to your LETB if you have concerns about the training of staff on your local unit.

Please let us know if you are planning to write to your LETB and be sure to send us a copy of any responses you receive.

[Insert name] [LETB and address]

Improving nursing standards for critically ill babies Dear [Insert name] I am writing to you as a local resident of [town/city], to request information on education and training opportunities provided to nurses and other staff who care for critically ill babies in [insert name of local Trust]. I am a parent of a premature/sick baby who was born at [add number of weeks/or amend to reflect your own personal experience].

One in nine babies in [town/city] will be admitted to specialist hospital care in the first minutes, hours or days of life. However, research published by Bliss, the special care baby charity, shows that many babies are not getting the care they need and deserve as services are stretched to the limit.

NHS England’s service specification for neonatal critical care states that Trusts providing neonatal services must ensure a minimum of 70 per cent of nurses and midwives on the unit hold a post registration qualification in specialised neonatal care. However Bliss’ SOS report (2011) highlighted that more than half of the hospitals providing neonatal care in England are not meeting this requirement. Furthermore, the report found that nearly one in ten neonatal units reported that either their training and education budgets were being cut or that they had insufficient staff available to care for babies on their unit to be able to release staff for training.

[Add further information about concerns over staffing or training within local Trust where relevant.]

I would therefore be interested to learn what plans there are for training and developing neonatal staff in my local Trust and the timeframe for achieving these.

I look forward to your response.

Yours sincerely [Signature]

20

Useful Websites Care Quality Commission www.cqc.org.uk Department of Health www.gov.uk.dh Health Education England http://hee.nhs.uk NHS England www.england.nhs.uk Healthwatch www.healthwatch.co.uk

21

Contact Us Bliss Campaigns and Policy Team 9 Holyrood Street London SE1 2EL t 020 7378 1122 Bliss, the special care baby charity, provides vital support and care to premature and sick babies across the UK. Founded 30 years ago, we offer guidance and information at a critical time in families’ lives. We also fund groundbreaking research and campaign for babies to receive the best possible level of care regardless of when and where they are born.

Registered charity no. 1002973 Scottish registered charity SC040878

22