Health services for children with special educational needs and disabilities
Peterborough has lots of health services for children and young people. These include GPs, pharmacists, dentists, opticians and hospital services. These ‘universal’ services are available to everyone. To find your nearest service go to NHS Choices and enter your postcode.
Children with special educational needs and disabilities will need more support. This will be from different health services at different stages in their lives. This page includes descriptions of different health professionals. They may help children and young people with disabilities.
We have lots of information to help you stay healthy on our Staying healthy webpage. This information is written specially for you.
Integrated Care Systems are replacing Clinical Commissioning Groups - The new NHS Cambridgeshire and Peterborough
NHS Cambridgeshire and Peterborough
From 1 July 2022 big changes are taking place across the health and care system.
In Peterborough the Integrated Care System is called NHS Cambridgeshire and Peterborough
This video How does the NHS in England work and how is it changing? will help you understand what the changes are.
You can also read a transcript of the video below.
Big changes are taking place across the health and care system.
- What does this mean for the organisations that make up the NHS?
- How will they collaborate with other parts of the system?
- And what’ll these changes mean for you and me?
When the NHS was set up, it focused on treating single conditions or illnesses.
Since then, our health and care needs have changed; more of us are living longer and many have multiple conditions that require regular, ongoing care.
However, this hasn’t been reflected in the NHS’s structure, a patchwork of organisations that often work independently from one another. Navigating this can be confusing and can have a negative impact on our experience of care.
So, for some years now, health and care staff and leaders, have been working to bring organisations closer together to better meet our needs by working in a joined-up way.
Primary and secondary care, social care, mental health and community health services have been seeking to partner with each other in different ways.
At a very local level, GP surgeries have been coming together to form primary care networks, groups of practices working together across areas called ‘neighbourhoods’. By sharing resources and working closely with other local people and services, they can provide a wider range of services than a single GP surgery.
Health and care organisations have also been working together across larger areas called ‘places’ – often covering the same area as a local authority – where large parts of the NHS budget are spent. Here, local government, charities, residents and NHS partners can work together to understand and meet local health needs.
But previous laws have prevented services becoming even more joined-up.
The 2022 Health and Care Act aims to change this and make it easier for organisations to work together.
What do these changes look like?
Organisations are now coming together across even larger areas to form integrated care systems, partnerships of health and care organisations that plan and pay for health and care services.
There are around 40 integrated care systems across England and although they’ve existed for some time, the Health and Care Act gives them legal status, as well as new powers and responsibilities.
Integrated care systems are made up of two parts: integrated care boards and integrated care partnerships.
Integrated care boards decide how the NHS budget for their area is spent and develop a plan to improve people’s health, deliver higher-quality care and better value for money.
Integrated care partnerships bring the NHS together with other key partners, like local authorities, to develop a strategy to enable the integrated care system to improve health and wellbeing in its area.
NHS trusts are also coming together to form provider collaboratives, new partnerships that can bring together providers such as hospitals, mental health services and community services.
How are these new structures funded?
Integrated care systems get most of their money from NHS England, which is the national body for the NHS in England, and sets the operational priorities for the health system.
It’s responsible for the health services you and I access day to day, which are inspected and regulated by the independent Care Quality Commission.
The Department of Health and Social Care sets out what the NHS is expected to deliver for the money it gets from the government – which comes from our taxes. It also holds budgets for some of the other areas that have an impact on our wellbeing, like public health.
Throughout these new structures, local authorities play a key role; they receive money locally and from national government, which goes towards funding a range of services that support our wellbeing and prevent ill health.
What does this all mean in practice?
The Health and Care Act has put in place a legal framework, that enables services to work more closely together, so it’s easier for you and I to receive the care we need, when and where we need it.
For these changes to succeed, staff and local leaders will have to work with one another differently, alongside key partners in local government, the voluntary sector, and communities themselves.
Of course, services face other challenges, like workforce shortages, growing waiting lists and the impact of the Covid-19 pandemic.
While the new structures won’t fix all these issues, by enabling services to work more closely together and join up services for patients, it’s hoped that the health and care system will be better able to meet our changing health and care needs in the future.
Who do you ask for help?
Concerns and questions
If you have concerns or questions about your child’s health the first person you talk to is your GP, health visitor, school nurse for medical services or your dentist for dental services.
These are our universal health services that anyone can access and you do not need a referral.
Building a relationship with the universal health services is important from the moment your child is born and throughout their development.
Universal services are described in more detail on our Universal Health Services page.
Universal Health Services
Universal health services, also called primary services are health services that everyone in the population can access. They act as the ‘front door’ of the NHS and a referral is not required for them.
Building a relationship with the universal health services is important from the moment your child is born and throughout their development.
They are your first point of contact if you have concerns or questions about your child’s health.
They can help with a wide range of health issues and any concerns you might have about your child’s development. They can also refer you to specialist health services depending on your child’s needs.
Primary services include:
- General Practitioners (GP)
- NHS 111
- Urgent care centres & minor injury units
- Accident and Emergency Departments (A&E)
- 0 – 19 Healthy Child Programme (includes Health Visiting Service (0 – 5) and School Nursing Service (5 – 19)
Find out more on our Universal Health Services page.
Specialist Health Services
Some children and young people with special educational needs and disabilities will have more complex needs and may need more specialist services, also called ‘secondary services’.
- Speech and Language Therapy (SALT)
- Occupational Therapy
- Children's Community Specialist Nurses
- Community Paediatricians
- Psychology Children's Service
- Hospital Services
- Specialist Nutrition and Dietetic Service
- Specialist Dental Service
You can find out more about these specialist health services on the Speclalist Health Services page.
Common Health Concerns
Some common health concerns that parents have are:
- Eating issues
- Sensory impairment
- Neuro Developmental Disorders
- Mental Health and Wellbeing
- Continence and toileting
- Puberty and children with a disability
- Equipment and Adaptations
- Wheelchair service
You can find out more about these on our Common Health Concerns page.
Life-limiting needs and palliative care
If you have been told that you or your child may not get better, you might also have heard about palliative care.
Palliative care is for people living with a terminal illness where a cure is no longer possible. It is not just for people diagnosed with terminal cancer, but any terminal condition.
It is also for people who have a complex illness and need their symptoms controlled. Although these people usually have an advanced, progressive condition, this is not always the case.
Palliative care aims to treat or manage pain and other physical symptoms. It will also help with any psychological, social, or spiritual needs. Support may involve medicines, therapies, and any other support that specialist teams believe will help. Palliative care also includes caring for people who are nearing the end of life. This is called end of life care.
The goal is to help everyone affected by the diagnosis to achieve the best quality of life.
Palliative Care Hub
A free out of hours phone service is now available to patients, relatives, friends, and all healthcare professionals providing specialist advice and support to those with life limiting illnesses in Cambridgeshire and Peterborough.
East Anglia’s Children’s Hospices (EACH)
East Anglia’s Children’s Hospices (EACH) supports families and cares for children and young people, 0-18 years, with life-threatening conditions across Cambridgeshire, Norfolk, Suffolk, and North, Mid and West Essex. Their family centred approach includes specialist nursing care, symptom management support, short breaks, wellbeing activities, therapies and counselling; all meeting the individual needs of the child, young person and whole family.
Their hospices aren’t just about end-of-life care; they’re often very happy and fun places, where young people can live life to their full potential. They are places where families feel safe, at home and where they can spend quality time together, enabling parents to be parents not caregivers. When time is short, they help families make the most of their precious time together.
EACH offers care to families with children and young people who:
live in North, Mid and West Essex, Norfolk, Suffolk, Peterborough and Cambridgeshire
have a condition with no reasonable hope of cure and from which they may/will die in childhood or early adulthood
have a condition (or are diagnosed with a condition in the antenatal period) for which curative treatment may be feasible but can fail, such as children and young people with cancer and for babies born where intensive care has been deemed inappropriate and those with post-natal conditions which result in the baby experiencing unbearable suffering in the course of their illness or treatment.
Families can self-refer, or be referred by a health professional, by contacting the hospices by:
Telephone (01223 815100)
Using their website.
Sue Ryder Thorpe Hall Hospice
Sue Ryder Thorpe Hall Hospice is the only specialist palliative care inpatient unit in Peterborough. They provide care and support for people who are living with life-limiting conditions, as well as supporting their families.
Their services include:
- Inpatient care
- Virtual day services
- Family and bereavement support
- Complementary therapies
- Spiritual care
- Hospice at Home
Patients can be referred by their GP, consultant, or other healthcare professional by downloading one of the referral forms, and returning it to the hospice (instructions and contact details are on the form).
Complex health needs
Some children and young people (up to age 18), may have very complex health needs.
These may be the result of:
- Congenital conditions
- Long-term or life-limiting conditions
- Serious illness or injury
Children with such complex needs may need additional health support to that which is routinely available from GP practices, hospitals or in the community.
This additional package of care is called continuing care.
Any child or young person up to their 18th birthday who has a complex health need may be eligible.
There are significant differences between children and young people’s continuing care and NHS Continuing Healthcare for adults. Although a child or young person may be in receipt of a package of continuing care, they may not be eligible for NHS Continuing Healthcare.
Any young person in receipt of continuing care will be assessed when they are aged 16-17, to see if they are likely to be eligible for NHS Continuing Healthcare when they turn 18. This is part of transition planning.
A referral can be made by any health professional or carer who feels a continuing care package may be required. Continuing care requests need to be supported by clinical reports and recommendations from professionals involved with your child. However, your GP should be able to help you with this.
When a child or young person is referred for an assessment, the assessor might first check if they are likely to need a full assessment.
The Continuing Care Commissioning Specialist Nurse and the Nurse Assessors are responsible for the assessment to whether a child or young person has continuing care needs in line with the Children and Young People’s Continuing Care National Framework.
The national framework provides guidance, and a set of categories of needs to support decisions on whether a child has a continuing care need.
An important part of the assessment is to capture the preferences of the child or young person and their family.
The assessment will look at the current care being provided but a decision on whether a child or young person has a continuing care need is based on the nature of their needs, rather that the care available, or whether they have a particular condition.
The Continuing Care Commissioning Specialist Nurse and the Nurse Assessor will make a case to a panel of experts, who decide based on the evidence, and the recommendation, if the child or young person has a continuing care need.
A decision is usually made 6-8 weeks from referral. Depending on the decision, a package of care is then agreed; some of this care may be provided through existing services; some may need to be specially arranged. The package of care will be kept under regular review to ensure the developing child or young person’s needs continue to be supported. A child or young person’s eligibility for continuing care may change as their needs change.
Childrens Community Specialist Nursing Service
Within the Children's Community Specialist Nursing Service (Cambridgeshire), the Complex Care Team provide respite to children aged 0-18 years who meet the criteria for Children’s Continuing Care in the home setting.
The service is available to children who are resident in the Cambridge City, South & East Cambridgeshire and Huntingdon areas. Referrals are accepted from a range of health and social care professionals.
You will find more information on their webpage Childrens Community Specialist Nursing Service
Designated Clinical Officer
Children and young people with special educational needs and disabilities
The Designated Clinical Officer supports NHS Cambridgeshire and Peterborough to meet its statutory responsibilities for children and young people with special educational needs and disabilities, and agrees the health services within an education, health, and care plan.
The Designated Clinical Officer (DCO) for SEND ensure health’s compliance with the legislation and spirit of the SEND code of practice (under the children’s and families act 2014) leading to improved outcomes for children and young people with special educational needs and disability.
The Designated Clinical Officer:
- Is a point of contact for local partners, when notifying parents and the local authority about children and young people they believe have or may have SEN or a disability
- Offers advice on SEN or disabilities
- Provides health advice to local authorities, schools and colleges regarding children and young people with SEN or disabilities
- Provides a contact so that appropriate notification can be given to the local authority of children under 5 years who they think may have SEN or a disability
- Agrees the health services within an education, health and care (EHC) plan
If you have any questions, please contact the designated clinical officer for SEND, Siobhan Weaver, on 01733 847 326 or email capccg.SEND@nhs.net
Preparing for Adulthood
You can find lots of useful health information for young people preparing for adulthood on our Preparing for Adulthood - Good Health page.
Advocate for your healthcare and the healthcare of others
RESTORE2™ Mini and STOMP Training
What is it?
This Thera Trust training gives you the tools you need to advocate for your healthcare and the healthcare of others. Their Super Trainers with a lived experience will help you be taken seriously by health care professionals with the right language and approaches.
The NHS developed RESTORE2™. It is a tool to help people talk to health professionals. It teaches that soft signs are valid signals that a person is becoming unwell. Soft signs are changes to someone’s behaviour and other things that tell you something isn’t right and they are becoming unwell.
The training also gives you the knowledge of where and who within the health services you should contact. You will develop the words to use so you can get the right care at the right time.
STOMP (Stopping Over Medication of People with a learning disability, autism, or both) is a national initiative to stop the overuse of psychotropic (mind affecting) medicines. People with a learning disability, autism, or both are more likely to be given these medicines than other people. STOMP is about helping people to stay well and have a good quality of life. It is important to check that these medicines are right for that person, particularly as their needs may have changed since they first started taking them.
What will you learn?
- Spot soft signs of illness in others
- Know who to call for healthcare help first
- Know what information to provide, how to communicate and what key words to use when speaking to health professionals
- Build your confidence to deal with health professionals and when advocating for your loved ones
Who is it for?
Anyone wanting to advocate for the healthcare of people with a learning disability, autism, or both.
What will it cost?
The training is free to attend.
Where will it take place?
The training can be face-to-face or online.
Who do I contact for further information?
If you would like more information about the project, or would like to be kept informed of training dates, please email Restore2@thera.co.uk
This project is funded by NHS England.
You can also find more details on the Thera Trust website
Your local commissioners
Like other NHS organisations across the country, the Cambridgeshire and Peterborough CCG have recently become part of an Integrated Care System (ICS).
Integrated Care Systems, or ICSs, are partnerships between organisations that meet health and care needs across an area. In our case our Integrated Care System covers all of Cambridgeshire and Peterborough, split into North and South.
The North partnership, like the wider Integrated Care System (ICS), works across health, local authority, voluntary sector, and the wider community. They take collective responsibility for improving the health and wellbeing of residents, with a population of around 575,000. Most people’s day to day care and support needs will be met within a place and delivered through Integrated Neighbourhoods. These work with smaller population groups of 30,000 to 50,000 people, with Primary Care Networks at their cornerstone.
You can find out more on the Cambridgeshire and Peterborough Integrated Care System website and the North Partnership website.
Did we get it right?
If your complaint relates to NHS treatment and care you are advised to complain directly to that service’s central complaints team.
Hospitals and community trusts have teams, usually referred to as the Patient Advice and Liaison Service (PALS), to help patients, carers and relatives with enquiries or concerns. These teams can:
- Listen to your concerns
- Help sort out problems quickly
- Provide information on NHS services.
PALS act confidentially when handling patient and family concerns, liaising with staff, managers and, where appropriate, relevant organisations to provide solutions.
For hospital-based services you will need to contact the PALS Team at North West Anglia NHS Foundation Trust. You can email them Nwangliaft.firstname.lastname@example.org or call 01733 673 405. Here is a link to their website.
For community-based services you will need to contact the PALS Team at Cambridgeshire and Peterborough NHS Foundation Trust. You can email them on PALS@cpft.nhs.uk or call on 0800 376 0775. Here is a link to their website
If the PALS team are unable to resolve your concerns you have the right to make a formal complaint and they can give guidance and advice on what you need to do.
If you are unhappy with a primary care service, such as your GP practice, optician, or pharmacist, you can complain either directly to the practice manager of the surgery or if you prefer to NHS england, the organisation which manages complaints for these services:
Telephone: 0300 311 22 33 (Monday to Friday 8am to 6pm, excluding Bank Holidays)
Write to: NHS England, PO Box 16738, Redditch B97 9PT
The CCG ensures that it is kept informed of the complaints received by its providers and of improvements to services resulting from complaints.
You can find out more on the Cambridgeshire & Peterborough Integrated Care System - Patient experience team
Find out more on the Local Offer Appeals, Mediation and Complaints page.
Everything you need to get the most out of the NHS
Get Your Rights is a new interactive website which helps to explain to children and young people their rights when using the NHS.
The Citizen’s Advice Bureau also provide wide-ranging advice and support.
NHS Acronym Buster
Do you ever feel lost at the volume of acronyms in the NHS? The NHS confederation has a useful acronym buster for NHS terms here.
Providers, Organisations and Services
- Universal Health Services (Local Offer)
- Common Health Concerns (Local Offer)
- Specialist Health Services (Local Offer)
- Sensory Impairment (Local Offer)
- Preparing for Adulthood - Good Health (Local Offer)
- Mental Health (Local Offer)
- Neuro Developmental Disorders (Local Offer)
- Autism (Local Offer)
- Compliments and Complaints (Local Offer)
- Supporting your Neurodiverse child booklet
- Cambridgeshire and Peterborough NHS Foundation Trust
- North West Anglia NHS Foundation Trust
- Child and Adolescent Mental Health Services
- Cambridgeshire Community Services NHS Trust
- NHS Choices
- Healthwatch Cambridgeshire and Peterborough
- Disabled access to Peterborough City Hospital
- Healthy Peterborough
- Integrated Care Service - North Partnership
- Integrated Care Service