Complex care at home for children and young people

Children and young people with a diagnosis of long-term illness, disabilities or life-limiting conditions are described as having “complex needs”. This can be from birth, from an injury or accident or even something as simple as an illness.

Those with complex care needs often require additional support daily, overnight or during periods of illness. This is because children and young people with complex care needs often have weaker immune systems or health needs that cause them to become extremely poorly from everyday illnesses.

A lot of the time, these children, young people and their families are supported via complex care at home or in the community. This is designed to reduce hospital admissions and keep families together in the home environment.

What is complex care at home?

Complex care at home is a solution that enables people with care needs to continue living at home and in their local communities. It’s the preferred way of delivering care for children and young people with health needs and has become an alternative to hospital and care homes.

A trained healthcare assistant or a nurse will visit your home to deliver care and support such as treatment, medication and symptom management. They can also support your child or young person with personal care such as washing and dressing and can even help to prepare meals.

But care at home is not just at home. Your care team can also support your child or young person to access the community. This can include going to school or enjoying activities, to lead a more fulfilling life.

As well as supporting individuals to grow their independence and fulfil their potential, complex care at home also provides parents and advocates with essential respite, advice and support.

Key benefits of complex care at home

Health experts and funding bodies believe care at home produces better outcomes for children and young people because it offers families more benefits than alternative support options.

Flexible support

There isn’t a one size fits all approach to care at home. Your child or young person can receive as little, or as much help as needed. Care and support plans are tailored to specific needs, interests and home environments, incorporating your family dynamics and schedules, so it works for everyone in the home.

Home comforts

Complex care at home allows children and young people to receive care they would otherwise receive in a hospital setting, but in the safety and familiarity of the home environment. This means they’re in surroundings they recognise, with people they love. This limits family separation and offers an improved quality of life.

Reduces hospital admissions

Because of the nature of complex care needs, complex care at home is usually provided by experienced nurses or nurse-led healthcare assistants. Their knowledge, proactive approach to care delivery and risk management reduces hospital admissions, visits to GPs and other healthcare services, compared to when families manage complex care needs alone.

Accessing complex care at home

The local authority you belong to has a duty of care to provide support where required and appropriate. Most people with healthcare needs receive care free of charge, however you may need to contribute if the care service you choose exceeds the funding you’re granted.  

If you think your child may qualify for complex care at home because of their needs, but haven’t already secured help, here’s the process you need to complete to secure the support you need.

If you think your child has needs that require extra support, the first step is to contact your GP, your health visitor, district nurse or your child or young person’s teacher. They can refer you for an assessment with your local authority on your behalf.

Alternatively, you can contact your local authority’s social services team to arrange an assessment directly. You can usually find their details by visiting your local authority website. To find out who your local authority is, visit the GOV.UK website.

If your child or young person is being discharged from hospital, the nurse staff on your ward can arrange a health and social care referral to make sure you’re properly supported at home.

Once a referral has been made, the local authority will carry out a needs assessment to determine if your child or young person needs more specialised support.

A social worker will talk to you about the needs of your child or young person including their:

  • Health needs
  • social care needs
  • education needs

Once complete, the social worker will give you advice on what to do next, working with you to decide the type of help that would best meet the needs of your family.

If you are eligible for complex care at home, the local authority may offer to arrange a care service for you by sourcing an appropriate provider. Otherwise, you may be offered a personal health budget (PHB), so you can arrange the care you need independently.

A PHB is money allocated to you to arrange the care and support you need. This offers you more control and flexibility when it comes to care delivery and providers selected to support your child or young person.

You can manage this in a way that suits you, but usually via:

  • your local council.
  • a third party.
  • a direct payment.

If you opt for a PHB to fund care, the local authority should still be involved to guide you on appropriate providers to ensure your child or young person’s needs are being met.

Once you have funding in place, you will either be introduced to providers that could support your child by your local authority, or you will be given time to approach and suggest providers you think would be suitable.

When choosing a provider, it’s important to find out:

  • What their Care Quality Commission (CQC) rating is?
  • How will they meet your child or young person’s needs?
  • What is their approach to care?
  • Who will be delivering the care?
  • What training do staff receive?
  • Can you meet staff in advance?
  • When could they deliver care? Are they flexible?
  • How have other people found their service?
  • Are there any case studies they can share?
  • What additional support do they offer?
  • How can they support your wider family?

Care at home providers play a big role in your child and young person’s life and will spend a lot of time in your family home, so it’s important to get it right. If you’re unsure, ask more questions or reach out to an independent charity or support group for advice.

Looking for complex care at home?

Searching for complex care at home for your child or young person with complex care needs? Speak to our Children’s Complex Care team! Our specialist team delivers care for a variety of complex health needs in Greater London and surrounding counties.

Visit the Children’s Complex Care website page for more information or make an enquiry today!

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