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. The Cambridgeshire and Peterborough Clinical Commissioning Group, which is responsible for arranging for health services locally, has responsibility for assessing children and young people to see if they need a package of 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.
The CCG will assess any young person in receipt of continuing care 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 CCG 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 CCG will keep the package of care 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.
Designated Clinical Officer
Children and young people with special educational needs and disabilities
The Designated Clinical Officer supports the Cambridgeshire and Peterborough Clinical Commissioning Group 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 for CCGs or health providers 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
Your local commissioners
Cambridgeshire and Peterborough Clinical Commissioning Group (CCG) is responsible for commissioning most of the healthcare for the people of Peterborough and Cambridgeshire including GPs, acute hospitals, community and mental health services.
What does a CCG do?
CCGs are responsible for commissioning (planning, buying and monitoring):
- The care and treatment you may need in hospital and community health services, including district nurses, physiotherapy and other therapies
- Urgent and emergency care (including out-of-hours)
- The medicines you may be prescribed
- Mental health services
- Support and services for people living with learning disabilities
Importantly the CCG are not responsible for dentists, opticians and some specialist services such as children’s head injury rehabilitation – these areas are commissioned by NHS England.
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.
By working together under one umbrella organisation, different parts of the health and care system are better able to improve the health and wellbeing of local communities, reducing health inequalities and putting patients at the heart of everything we do.
Organisations that form part of the ICS include all NHS Trusts and organisations, Local Authorities and key voluntary sector partners. In our area this includes:
Two upper tier local authorities:
- Peterborough City Council
- Cambridgeshire County Council
Five district councils
- Cambridge City Council
- East Cambridgeshire District Council
- South Cambridgeshire District Council
- Fenland District Council
- Huntingdonshire District Council
Three hospital providers
- North-West Anglia NHS Foundation Trust (NWAngliaFT)
- Cambridge University Hospitals NHS
- Foundation Trust (CUH)
- Royal Papworth Hospital NHS Foundation Trust (RPH)
Two community providers
- Cambridgeshire and Peterborough NHS Foundation Trust (CPFT)
- Cambridgeshire Community Services NHS Foundation Trust (CCS)
- East of England Ambulance Service NHS Foundation Trust (EEAST)
- 85 GP practices
- Cambridgeshire Local Medical Committee
- Healthwatch Cambridgeshire and Peterborough
- The Cambridgeshire and Peterborough Health and Wellbeing Board
- Other partners, including parish councils as well as voluntary, community and faith organisations
Although the CCG will no longer be a separate organisation under the ICS, our hardworking staff will keep fulfilling a crucial role as strategic commissioners for our area.
Rather than providing healthcare and social care in separate, and sometimes isolated, parts of the system, the ICS approaches each patient’s health and social care needs as a whole.
This will help us offer better, more consistent treatment to our patients. Among other things, the ICS will help us achieve this by:
- Delivering care as close as possible to homes of the communities we serve – where possible, local providers will be empowered to design and deliver care on a local level
- Introducing a shared care record which will allow us to understand the patient’s needs as a whole
- Using public health data to inform decisions across the system Peterborough City Council and Cambridgeshire County Council also manage some local services such as Health Visiting and the School Nursing.
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.email@example.com 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 Clinical Commissioning Group's Patient Experience page.
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.
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.