This is an extremely important but stressful area for parents. To be blunt the NHS is bursting at the seams and in order to achieve any funding for your child you really have to fight long and hard. We found this to be one of the most stressful times, as soon as my son left Rehabilitation the fight for EVERYTHING began and still continues. The important thing here is to build a case to show that your child needs the support you are asking for, never accept No for an answer. In our experience most of the things we have requested (funding, equipment, nappies!) were a ‘No’ to begin with but with a little determination we achieved everything we wanted for our son. This is a bold statement but we truly feel that the NHS is hedging its bets on parents that don’t fight back, because many don’t… it is extremely stressful and sometimes quite degrading. In this section you will find some information provided by the NHS on how you get funding along with some where you can get support.

Children who are left with ongoing health needs after an accident can be considered for NHS continuing care. 

NHS continuing care, also known as NHS continuing healthcare or “fully funded NHS care”, is free care outside of hospital that is arranged and funded by the NHS. To be eligible for NHS continuing care, you must be assessed as having a “primary health need” and have a complex medical condition and substantial and ongoing care needs. Not everyone with a disability or long-term condition will be eligible.

You should be fully involved in the assessment process and kept informed, and have your views about your needs and support taken into account. Carers can also be consulted where appropriate, although family members should indicate that they are willing to be involved. A decision about eligibility should usually be made within 28 days of an assessment for NHS continuing care being carried out.

If you don’t qualify for NHS continuing care, your local authority will be responsible for assessing your care needs and providing services. To access this funding you will need to contact your local CCG (Clinical Commissioning Group) they are the NHS organisations that manage local health services and are responsible for assessing what level of care you need. You should be fully involved in the assessment process and kept informed, and have your views about your needs and support taken into account.

It is important again to stress that the Clinical Commissioning Groups (CCG’s) have limited funding and in our experience will aim to provide the least amount of care possible. We had to fight very hard to receive 24/7 care for Jago. Initially we were offered less than half of this and it was only because we appealed, sought legal advice and built a case that we achieved this level of care. This can be a very difficult and stressful process particularly when you are trying to look after a sick child however there are advocacy services and legal organisations that will provide support. We receive our funding in the form of a Personal Budget which allows us to be in control of how it is spent in relation to care.

starWhat is a personal budget?

A personal budget is an amount of money identified by the local authority to deliver parts of the provision set out in an Education, Health and Care (EHC) Plan. Families can request a personal budget as part of the planning process (in drawing up an EHC Plan or at Annual Review). Local authorities are under a duty to prepare a personal budget when requested. A personal budget can be delivered in one of four ways:

starNotional budget

In this circumstance the individual/family does not receive the money directly but is allocated a budget and participates fully in the planning and decision making around how the money is spent.

starBudget held by a third party

A different organisation holds the money and helps the individual/family decide how best to meet their EHC outcomes.

starDirect payments

Money is transferred directly into the individual’s bank account, which has been opened for the purpose, to meet the identified outcomes.

starAny combination of the above

A personal budget is used to purchase the services and support required by a disabled child to meet their specific requirements and to live a more independent life.

Historically, a disabled child has been assessed by the local authority, and from this, an offer has been made as to which service or services the family can access to meet their child’s requirements. This process has not been very transparent, has relied on professionals making decisions for families about which services they think will best meet a child’s requirements and has used a restrictive and sometimes inadequate assessment process.

A personal budget provides a family with a lot more choice and control over the services and support that will meet their child’s individual requirements in the best way. Once a specific support requirement is identified, the family is supported to assess their ‘real wealth’, meaning the resources available to the child and family, such as family support, capacities and resilience, that can help to meet their support requirements. It is acknowledged that although monetary wealth is vitally important, money alone will not develop a support plan for a child.

To find out more about how personal budgets can be used to transform the lives of disabled children, young people and their families, please download the FREE Making it Personal Resources from the link below: 

For further information on how to access this funding please go to NHS Social Care & Support Guide and for further support see: