New framework to support high-quality services for CYP with cerebral palsy

This month, NHS England has published its long-awaited Commissioning framework for children and young people with cerebral palsy. The framework provides a blueprint for high-quality integrated services to improve early identification, assessment and intervention which can significantly improve outcomes for babies, children and young people with cerebral palsy.

The Institute of Health Visiting has been actively involved in national groups and All Party Parliamentary Groups calling for measurable improvements to be made to services. We are therefore delighted to see this framework published – it represents an important milestone in bringing together a united vision for service improvements, supported by leading clinicians and the voices and views of families, underpinned by the latest evidence and NICE guidance.

Health visitors have been identified as having a key role to play in improving joined-up support for families. And we encourage health visiting practitioners, service providers and commissioners to work with their local Integrated Care Boards to support the successful implementation of this framework.

While this framework focuses on children and young people with cerebral palsy, it is hoped that learning from developing and implementing this framework could be extended to address broader conditions, including neurodevelopmental needs and care requirements of children and young people with other complex conditions and disabilities.

To support ICBs to improve care, NHS England has worked with key stakeholder organisations, including children and young people and their families and carers, to ensure that the recommendations made within the framework align with their feedback.

Background to the framework – why focus on cerebral palsy?

Cerebral palsy is the most common childhood onset disorder of movement and posture. As a chronic condition, the challenges remain throughout adult life. There is a clear imperative to improve healthcare for children and young people with cerebral palsy. Services are currently fractured, complex to navigate, and often uncoordinated. Many children are diagnosed late and miss out on vital support that can improve their development and health outcomes – any delay in identification and treatment can worsen life-long function, increase secondary complications, and decrease clinical wellbeing. It can also lead to the need for more invasive orthopaedic interventions later in childhood, requiring costly prolonged admission and rehabilitation. As a direct result of delayed assessment and intervention, children and young people and adults with cerebral palsy often experience diminished participation and quality of life.

Improving healthcare and outcomes for children and young people with cerebral palsy will require a whole system response and ICBs should collaborate to provide various services within their local area or through partnerships with key regional stakeholders. The framework sets out suggested services and professionals who will need to work together to implement the framework and ensure effective collaboration.

Spotlight on the role of health visitors:

Health visitors have a key role to play in early identification of infants at risk, or with “red flags”, of cerebral palsy to support early diagnosis and intervention. Health visitors also have a key role in connecting families to other services and specialist teams, brokering their engagement, and supporting families to navigate the numerous challenges that they often face when trying to access the care they need.

The framework identifies the need for comprehensive training and education programmes, with specific areas of focus to include:

co-ordinating training for the follow-up of high-risk infants post-special care baby unit
developmental follow-up of all children by health visitors and general practice staff
health visitors should be trained to spot the early warning signs (“red flags” in NICE guideline – NG62)
the involvement of community paediatricians
local pathways for initiating referrals and assessments, emphasising the importance of supporting children and young people with cerebral palsy and their parents and families
supporting early intervention – primary care teams, GPs and health visitors to provide universal care.

Next steps:

NHS England is working with a number of volunteer ICBs to baseline and assess their current service provision, using a short list of metrics and the framework as a benchmark for standard of care. Alongside this, they are working with clinicians from the key professional bodies involved to reflect on and assess their clinical best practice. This includes but is not limited to: British Paediatric Neurology Association, British Academy of Childhood Disability, British Association of Community Child Health, and the Institute of Health Visiting.

Coming soon – iHV training and resources for health visiting teams: The iHV has been working with leading paediatricians and experts in motor development and neurodisability to develop a “Motor Development Toolkit” for health visiting and bespoke training which incorporates the key recommendations outlined in this framework. Our resources and training are due to be launched at the end of June. Look out for further details on our website and via social media – or contact us at [email protected] to discuss your workforce CPD needs.

Read the Commissioning framework for children and young people with cerebral palsy here

iHV calls for more health visitors in Spending Review submission

Yesterday, the iHV submitted its policy proposals to the government’s Spending Review making the case for rebuilding health visiting services in England. The Spending Review provides an important opportunity for professional bodies to influence government spending over the next three years. The government has stated that they will use the Spending Review to change the way public services are delivered by embedding a mission-led approach, driving forward public service reform and making the best use of technology to better deliver services.

Our response brings together the collective voice of health visitors captured in our annual survey and the wider work of the Institute, outlining the poor state of child health and rising levels of need experienced by babies, children and families that cannot be ignored any longer. We are delighted that our call for investment in health visiting has attracted widespread support from across the child health and early years sector – the message is clear, we need more health visitors!

To improve our nation’s health and reduce pressure on NHS services, much greater attention needs to be given to prevention, early identification of health needs, and early intervention in the critical earliest years of life. Health visitors have a vital role to play as part of the “health” workforce, contributing to multiple clinical pathways through pregnancy, the perinatal period, and 0-5 years (for babies, children and adults).

It is therefore vital that the “broken” state of health visiting is addressed, alongside the NHS, with action to reverse the loss of more than 40% of health visitors since 2015. The cuts to health visiting services have been a false economy, impacting on families’ quality of healthcare and placing additional burdens and costs on other parts of the healthcare system.

Our request aligns with the government’s objectives to prevent ill-health by improving child health, and reform health visiting to reduce spiralling costs of late intervention. Our brief summary sets out our policy proposal:

To address the loss of more than 40% of health visitors (HVs) since 2015 and ensure all families receive support in line with the Healthy Child Programme, ring-fenced funding is needed for 1,000 extra HV posts each year for the next 3 years.
To reform health visitor services and support workforce retention, salary uplift funding is needed for 689 specialist HV posts (providing clinical leadership for government priorities, like perinatal mental health, immunisations and SEND).

Benefits and policy rationale

More health visitors are needed to deliver the government’s ambitions for prevention and early intervention (across health, education and social care), including reducing children’s A&E attendance and improving immunisation uptake, the quality of postnatal care, and early identification and support for “school readiness” and SEND.

Deliverability of proposals: It is far easier to rebuild and reform a tried and tested service like health visiting than invent a new preventative health workforce, with all the regulatory and training infrastructure needed for quality assurance and to protect the public. We welcome the government’s commitment to “reform health visiting”. This will require actions to improve workforce capacity, recruitment and retention.

Costs:

Costs of 1,000 more health visitor posts are £52.9m for year 1, £105.8m for year 2, and £158.7m for year 3.
Salary uplift costs for 689 specialist HV posts are £8.64m per annum (from band 6 to band 7).

We submitted our brief policy summary online on 10 September, alongside our supporting information and costings – available here.

iHV welcomes EIF report on Adverse Childhood Experiences

iHV welcomes the publication of the Early Intervention Foundation’s report – Adverse childhood experiences: What we know, what we don’t know, and what should happen next.

This report surveys the evidence relating to the prevalence, impact and treatment of Adverse Childhood Experiences (ACEs), the extent to which ACEs should provide the basis for frontline practice and service design, and the known level of effectiveness and value of ACE-related approaches, such as routine enquiry and trauma-informed care.

Commenting on the launch of Adverse childhood experiences: What we know, what we don’t know, and what should happen next, Dr Cheryll Adams CBE, Executive Director of the iHV, said:

“This report will add real value to the current interest in ACEs, pointing out as it does their limitations as well as their benefits in understanding the impact of adversity in childhood and into later life. Its publication, in the same week as Sir Michael Marmot’s 10 Years On update report on health inequalities, adds urgency to the recognition of the adverse experiences of so many children as a result of an more unequal society as well as their individual circumstances.”

iHV responds to Children’s care crisis

iHV responds to Local Government Association (LGA)’s analysis on children’s social care, published today, which calls for Government to use the upcoming Spending Round to fully fund the demand on children’s services next year to allow councils to provide the vital support that children and families rely on.

Severe funding shortages and huge demand pressures mean councils were forced to overspend on their children’s social care budgets by nearly £800 million last year in order to try and keep children safe, the Local Government Association reveals today.

Dr Cheryll Adams CBE, Executive Director iHV, commented:

“The Institute has long warned that more children entering safeguarding procedures and care would be an inevitable consequence of cutting preventive services such as health visiting which identifies needs in families early, mobilises support for families in need and reduces long-term negative consequences of late identification for these children, such as safeguarding issues and care proceedings. These new figures should be of concern to the whole population as, as well as negatively impacting on the child his/herself and their potential future, these high levels of vulnerable children impact crime rates and criminal justice budgets and increase demand on the NHS from complex health needs.

“One in three health visitors has been lost over the past 4 years and the imposition of unhelpful new ways of working makes it impossible for the profession to adequately offer the necessary long term support that some families need. Alongside the LGA, we also call on the Prime Minister and Treasury to use the upcoming spending review to reinvest into public health, preventative and children’s services. The economic arguments are clear.”

Read LGA article: Children's care crisis: councils forced to overspend almost £800m on children's social care

iHV supports call for more investment into Early Intervention

iHV supports the call by the Early Intervention Foundation for more investment into Early Intervention in England, following the publication of its report, Realising the potential of early intervention. This report sets out a bold plan of action to ensure effective early intervention is available to the children, young people and families who need it most.

Dr Cheryll Adams CBE, Executive Director iHV, said:

“The Institute of Health Visiting supports the call by EIF for more investment into Early Intervention in England. We would like to see this extended to research and investment into whole universal systems change, as well as individually focused approaches. For example, health visitors are alarmed by seeing current cuts to their services resulting in many more vulnerable children having their needs recognised late, and needing much more complex and expensive interventions, than if their families had received sufficient early support that health visitors could once offer.”

Go to EIF Report - Realising the potential of early intervention