If someone has a complex health condition they are diagnosed with an illness, disability or sensory impairment and need a lot of additional support daily. Anyone could be born with a condition or disability or develop one after an illness or injury. The NHS has this useful guide on How to care for children with complex needs.

Here are some highlights and tips:

Getting advice 

Carers Direct

Carers Direct has an advice line for parent carers – call on 0300 123 1053 from 9am to 8pm Monday to Friday, and 11am to 4pm at weekends (closed bank holidays, or use the textphone/minicom service on 0300 123 1004

Contact

The charity Contact also has advice and information for families with disabled children.

Finding support

Many organisations and charities, big and small, specialise in support and campaigning around a particular disability such as Down Syndrome Association and the National Autistic Society. You can find local support and groups on The Local Offer.

Ask you GP Practice (Doctors) if they have a carers' register, If they do they can keep an eye on your health and you'll be able to speak to them confidentially about how you're feeling. They too can help you find further support.

Your child's medical needs

Medical and healthcare needs are the responsibility of your local NHS health services. This includes any medical equipment, such as special beds, bed equipment, hoists, and aids to help with incontinence, mobility or hearing. These are usually provided for free.

The NHS says if your child needs regular healthcare treatment at home, community children's nurses may be able to support you and could help with treatment such as giving oxygen or injections.

Find out more about continuing care for children and young people.

Support with daily living

Buckinghamshire Council (The Local Authority) is responsible for providing any non-medical care services your child is assessed as needing (following a needs assessment). This may include things like equipment for daily living, home care, access to play schemes, and respite care so that you can have a break.

Respite, Short Breaks and Activities

Time away can often be beneficial for yourself and your child. Here are some ways this can be provided.

Short Breaks 

Short Breaks give children and young people with a disability time away from the family. This gives them the opportunity for independence, having fun with their peers, making new friends and gaining new experiences. Action for Children provides services for Buckinghamshire Council and the NHS Buckinghamshire Clinical Commissioning Group. There are three types of Short Breaks, these are:

• Universal Short Breaks - These can be used by anyone without an assessment such as youth clubs, after school activities, Cubs and Brownies.

• Targeted Short Breaks - activities specifically for disabled children aged 0 to 19 years. These are known as The Bucks Activity Project. These services may be provided in the evenings, weekends and school holidays. 

• Specialist Short Breaks - daytime or overnight respite services, or services paid for by direct payments. Direct Payments are sums of money given to those eligible to buy their own care services.

Find out more about Short Breaks in Buckinghamshire.

Activities 

You can find inclusive local activities, clubs and groups in Buckinghamshire on the Local Offer and filter by those that support a particular need or needs, that your child has. We often promote these on the Local Offer Facebook page so like to keep in the know. 

Adulthood

Many young people who have disabilities live independent lives, but others may need ongoing or significant care. Everyone's needs are different so even if your child has extensive care needs, with the right support, they may still be able to live independently. 

When a child approaches their teenage years, they begin what is known as Transitions. A simple way to picture if this their education, health and social care services will begin to change, moving to adult services if needed. This is often known as Preparing for Adulthood. Take a look at our Preparing for Adulthood information.

Tips and More Information

Advice on parenting disabled children (Family Lives)

Help if you have a disabled child (GOV.UK)

Walking aids, wheelchairs and mobility scooters (NHS)

• Acute Paediatric Services (Bucks Health Trust)

• Audiology and hearing services

• Child and Adolescent Mental Health Service (CAMHS)

• Community Nurses Team for Children with a Disability 

• Community Learning Difficulties Health Team (Aylesbury)

• Community Learning Difficulties Health Team (High Wycombe)

• Community Paediatricians care for children with a wide range of conditions, particularly with developmental problems and complex needs.

• Continuing Care

• Dental Services - Orthodontics

• Dental Services - Bucks Priority Dental Service

• Family Nurse Partnership

• Health Visiting Service

• Neonatal Services (intensive care for vulnerable infants)

• Occupational Therapy

• Ophthalmology (Eyes)

• Paediatric Community Nurses - based at Stoke Mandeville Hospital, they see children with complex health needs or following a stay in hospital.

• Physiotherapy

• Public Health

• School Nursing Service

• Speech and Language Therapy (SALT)

• Wheelchair Services 

What is Mental Health?

Mental health refers to a person’s cognitive, behavioural, and emotional wellbeing - it is all about how you think, feel, and behave.

There is a wide range of common mental health problems such as depression and anxiety to more complex problems such as schizophrenia and bipolar disorder.

Depending on which mental health condition you have, a mental health illness may cause you to feel tired, sad, helpless, angry or agitated all the time. 1 in 4 of us have problems at some time in our lives, such as money worries, stress at work or the death of a loved one, which can affect our mental health.

In a few cases, mental health-related illnesses can cause serious and long-lasting effects. Around a quarter of all GP visits are for a mental health problem.

The relationship between issues with mental health and Special Educational Needs or Disabilities (SEND) is complicated. A child or young person with SEND is often at a higher risk of developing a mental health illness or issue but similarly, mental health issues or illnesses can be the cause of SEND.

If you are experiencing a mental health problem, it can be very distressing and frightening especially when you are first diagnosed. Often, it’s hard to talk about the things that are worrying you at first. But it's better to talk to someone about how your feeling and ask for help when you need it.

If you know something's not right, don't pretend that everything is OK. There are many people who can help, but the NHS is usually the best place to start.

Find your local NHS Mental Health Service - https://www.nhs.uk/service-search/mental-health

The NHS is there for everyone, talk to your GP, they aren't just there for your physical health - they also have experience in helping people with mental health problems and can refer you to specialist services.

If you don't have a GP, register with one - find a GP near you.

People with special educational needs and disabilities (SEND) may require additional health care support to meet the needs that come from having a disability, accident or illness.

Birth to 18 years

Children and young people who have very complex health needs will receive additional health care support from birth, up until 18 years of age. These health needs may be the result of:

• congenital conditions

• long-term or life-limiting conditions

• disability

• serious illness or injury

This additional health care support can be provided by GP practices, hospitals or in the community and is called Continuing Care. At the age of 18, a different system starts called NHS Continuing Healthcare.

Continuing Care

For ages: birth to 18 years

Who to contact: GP or Continuing Care Team 

Related information: NHS - Children and young people's services

18 years and over

NHS Continuing Healthcare is an ongoing package of health and social care for adult ages 18 and over. It is arranged and funded by the NHS to those who have a primary health need. This care is provided to meet needs that come from having a disability, accident or illness.

To access NHS Continuing Healthcare it is likely that young people will have an assessment of their eligibility. This is because receiving Continuing Care up to 18 does not necessarily mean you will receive NHS Continuing Healthcare after 18. It is important that families are informed and are involved in the assessment and planning.

NHS Continuing Healthcare 

For ages: 18 years and over

Who to contact: Continuing Healthcare Team

Related information: NHS continuing healthcare

• Florence Nightingale Hospice Charity

• Rennie Grove Hospice Care

• Helen and Douglas House

• Keech Hospice Care

• Child Bereavement UK

This is a process by which local authorities and NHS Clinical Commissioning Groups assess the current and future health, care and wellbeing needs of the local community to inform local decision making.

JSNAs were introduced by the Department of Health in April 2008 to strengthen joint working between the NHS and local authorities. The JSNA helps to develop our local Joint Health and Wellbeing Strategy with the purpose of reducing inequalities and improving the health and wellbeing of the whole community.

Each JSNA chapter will characterise the health and well-being status of the local population, identify inequalities, illustrate trends, describe local community views and highlight the key findings.

> View chapter on Special Educational Needs and Disability (SEND)

All JSNA chapters can be found on the Health and Wellbeing Buckinghamshire website.

The Designated Clinical Officer (DCO) has a key role to support joined-up working between health services and local authorities and to implement the Children and Families Act reforms. The DCO should help facilitate the Education Health and Care Plan (EHC Plan) process and link with the local health systems.

Read more about the DCO role

Supporting pupils at school with medical conditions

People aged 14 and over who have been assessed as having moderate, severe or profound learning disabilities, or people with a mild learning disability who have other complex health needs, are entitled to a free annual health check from their GP.

Adults and young people aged 14 or above with learning disabilities who are known to their local authority social services, and who are registered with a GP who knows their medical history, should be invited by their GP practice to come for an Annual Health Check. If you haven't been invited yet follow this easy read guide to getting your free health check (PDF/A 122KB)

Find out more about what to expect from your Annual Health Check

Clinical Commissioning Groups (CCGs) are NHS organisations set up by the Health and Social Care Act 2012 to organise the delivery of local health services in England. CCGs are clinically led groups whose membership includes all of the GP Practices in their geographical area.

Buckinghamshire CCG is a group of 50 member GP practices and their associated branches across the entire county, serving a population of over 530,000. The practices have come together (April 2019) into 12 Primary Care Networks whose purpose is to ensure that Buckinghamshire residents are able to access local healthcare services that meet the needs of the population.

The Buckinghamshire, Oxfordshire and Berkshire West Integrated Care System (BOB ICS) is working towards a joined-up approach and implementation of the NHS long term plan. Buckinghamshire has a wide range of services for children with additional needs and places where you can go for help and advice.

Read more about the Buckinghamshire Clinical Commissioning Group

• Patient Advice and Liaison Service (PALS) - for hospital complaints

• For Clinical Commissioning Groups (CCG) Complaints, either go straight to the provider or contact PALS.

• If you want to make a complaint about a health service you should contact the local NHS Trust that provided the service and follow their formal complaints process.

According to the Children’s Act 2014 (Section 23) there is a duty for health bodies to bring certain children who are under compulsory school age and who have (or probably have) special educational needs or a disability, to local authority’s attention. 

According to the law the group or Trust must inform the child’s parent of their opinion and give the child’s parent an opportunity to discuss their opinion with an officer of the group or Trust.  The group or Trust must then bring their opinion to the attention of the appropriate local authority in England. If the group or trust think a particular voluntary organisation is likely to be able to give the parent advice or assistance in connection with any special educational needs or disability the child may have, they must inform the parent of that.

In Buckinghamshire, the Paediatricians notify the Integrated SEND Service within the Local Authority by completing a form and submitting it via secure email. The Integrated SEND Service will then discuss relevant provision at the area SEN Panel meeting to ensure that all of the appropriate agencies are supporting the child and family (such as Portage and Therapies). They also make contact with any educational setting to ensure that they are equipped to meet need. The panel also discuss whether an EHCP might be appropriate and at what point it will be the most useful. Families are then notified about the outcome of the discussions.

• For advice and support on conditions, visit the Contact, for Families with disabled children website.

• Assistive technology

• Transitions | Health (SEND)

• Personal budgets