Is your child entitled to help that you are not getting?

Updated: Jan 26

Did you know that if your child has continuing health needs, disability or educational needs they are probably entitled to have a range of extra support planned, delivered and co-ordinated?

Even if parents and carers are aware of this, the bureaucracy involved can be rather intimidating for some of us. It took years and quite a lot perseverance for us to get a joined up plan between Health, Social Care and Education (EHCP) and for my son to receive a personal health budget/direct payment. A personal health budget/direct payment is a sum of money that is made available for a child who has continuing health, disability and educational needs. These funds are provided by social care, NHS and education.


Then when we moved to Scotland my son's personal budget 'got lost' in transition resulting in further complications. We still have the same child with the same conditions and the same challenges and he is still cared for by the NHS. So why was it so difficult?


Simply, it seems just because of jargon!


I dug, delved and pushed for reasons and I am sharing what I have found in the hopes that it will help you to find the support you need to care for your child at home.

The guidance makes it clear that any child receiving NHS continuing healthcare has the right to a personal health budget, direct payments, self directed support - or whatever any one particular body, department or locale chooses to call it. All have the same meaning but use different terminology. Use the wrong terminology and confusion, misunderstandings and barriers are likely appear.


Wherever you live within the UK, the care pathway and provisions should be the same. However, the NHS across the UK is not one body, health care is organised and funded by region and budgets are implemented differently in various countries and boroughs.


In England, care is administered by Clinical Commissioning Groups (CCGs), or in some cases by NHS England.


In Scotland, Wales and Northern Ireland, the equivalent organisations are called Health Boards.


Every local authority must include information about Personal Health Budgets (PHB), Education Health Care Plan (EHCP) and or Self-Directed Support in its local guidance, including information about the different services and how to apply for the funding.


Step 1 - Click on your country to find your Local Health Board or Clinical Commissioning Group. What care services are on offer, by whom and the terms they use.


NHS England - https://www.england.nhs.uk/ccg-details/

NHS Scotland - https://www.scot.nhs.uk/organisations/

NHS Wales - http://www.wales.nhs.uk/nhswalesaboutus/structure

NHS Northern Ireland - http://www.hscboard.hscni.net/local-commissioning-group/

Step 2 - Request that your child be assessed. The assessment will be carried out by a social worker for Social Services and by your child's community lead consultant or equivalent specialist for Health, helped by the multi-disciplinary team. Generally Social Care, Health and Education (dependent on age) will work together to asses your child to determine a budget that reflects their individual needs.


Your local authority might agree that you are due support but Social Care may argue that Health should be paying or vice versa. KEEP FIGHTING!

If you are struggling ask for help. Your local hospital should be able to signpost you to an advocate. They can…


· Help you tell someone that you need support.


· Help you put your views across during an assessment of your support needs.


· Help you say what you want known when planning your support.


· Make sure your views are heard during reviews.


· Keep you informed about your rights so that you can decide what is best for you.


I am listing a few below and will continue to add as I update.

Contact - Personal budgets in England Factsheet

Contact - Personal Budgets and Social Care in Scotland


GIRFEC - Getting it right for every child (GIRFEC) supports families by making sure children and young people can receive the right help, at the right time, from the right people.


If you have any support you can offer or you would like more help please feel free to email me: nicolastewart@me.com

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