Personal Health Budgets (PHBs) with Ed Kemp

If a child qualifies for Children’s Continuing Care (CCC), they are entitled to receive a Personal Health Budget (PHB). The PHB is the money used to deliver the continuing care package. It can be provided as a notional budget (managed by the NHS), a third‑party arrangement, or a direct payment. So, a PHB isn’t different to Children’s Continuing Care, it’s the money to deliver that care.

Yes. A notional budget is still a Personal Health Budget; but the care is commissioned/managed by the NHS on your behalf rather than paid directly to you.

A PHB continues for as long as the child meets the criteria for Children’s Continuing Care (or, in adulthood, Continuing Healthcare) and the support is still required. The PHB will be in place until your child no longer needs that level of support, or you no longer want the support of CHC.

Yes. A PHB is the mechanism used to deliver a continuing care package. If it’s an agency, they’ll call it a notional budget. If you’re receiving the money, it’ll be called a direct payment. If hours are being reduced or not met, you can ask for written justification from the ICB and consider making a complaint. You may also request a social care assessment if additional family support is required.

Your local Integrated Care Board (ICB) should have a PHB team or it will be the Children’s Continuing Care (CCC) team. If you are unsure who they are, speak to your community nurse or health professional. If the area you live in does not have a PHB team, ask them who is in charge of PHBs for your area. If you still cannot find out, you may consider making a Freedom of Information request.

A Personal Health Budget (PHB) does not directly set up or start a child’s education. Instead, a PHB can be used to support the health needs that enable a child to access education at the age when they become eligible.

Many children receive an EHCP around school‑starting age (often around 5 years old, when formal education begins). However, some children receive an EHCP earlier, if their needs require it. This is where things can become confusing for families.

Local authorities sometimes say that because the child is not yet school‑age, parents are expected to provide all care themselves, as they would with any baby or toddler. For a child with complex health needs, this isn’t realistic. You may not be able to leave them with a babysitter, family member, or untrained carer, they require someone properly trained to meet their health needs.

Before school age, you may need a social care assessment as well as support through health services. The essential point is that if your child’s health needs prevent you from completing everyday tasks (e.g., going to work, shopping, or having short respite), then social care and healthcare should work together to provide the right support.

A Personal Health Budget may be used to help deliver the health elements of the support your child needs in order to:

• Attend early education (if appropriate for their age)
• Access specialist nursery provision
• Enable you to meet essential day‑to‑day responsibilities
• Ensure safe, trained care is in place

In Summary:

• Education is not “started” by a Personal Health Budget.
• A PHB can fund health‑related support that enables a child to access education at whatever age they are eligible, which is typically around 5 but can be earlier if the child already has an EHCP in place.
• If the child is younger than school age, and their health needs require trained carers, health and social care must work together to ensure safe and appropriate support is provided.

You set the pay rate if you are the employer, but it must be workable within the agreed budget. Paying significantly above the suggested rate may cause the budget to run out early. You can discuss pay levels with the ICB if they make recruitment difficult.

Yes, but ensure your budget is calculated based on the higher rate and that reducing the number of carers does not lead to the ICB interpreting this as a reduced need. The ICB cannot dictate how much you pay as you are the employer as long as it works for the budget you have been set.

No. You can still raise concerns and request a review if the rate does not allow you to recruit appropriate staff. It should be an ongoing discussion to see if you can make this work with the hourly rate set out in your budget, reference any evidence to back this.

Recruiting carers for a child with complex health needs can be challenging, and many families experience the same difficulties. Here are the key things you should know:

• Finding the right carers can take time. Families often struggle to recruit carers who are confident, willing to learn, and able to meet complex health needs. When the right people are found, they can become long‑term, trusted support, but the process of getting there can be difficult.
• Pay for carers should be fair and equitable. This means the budget should allow you to offer a realistic rate that attracts people with the right skills. If you can’t recruit because the pay level is too low, you can raise this with your PHB team as evidence that your current budget is not sufficient.
• You can ask for agency care if direct employment isn’t working. Agencies must be considered where it is clear that directly employed staff cannot meet your child’s needs.

If you are receiving a direct payment, you may be classed as the employer. This means:

• You choose the pay rate
• You manage employment responsibilities
• You may get limited support with recruitment

However, choosing a higher pay rate may mean your budget runs out faster, so it’s important to discuss what is realistic and sustainable.

• If you need a higher budget or agency support, it helps to gather examples of local agencies delivering similar complex care and their pay rates. Typical pay rates in your area. Evidence you have tried to recruit but can’t find suitable staff. This helps strengthen your case when asking for the budget to be reviewed.

This depends on your skills and confidence. Many families prefer a payroll company to reduce the administrative burden. If you choose this, request that payroll costs are included in your PHB.

First think about why you can’t use the budget. Is it because of the pay rates and the fact that you can’t recruit anyone? Also remind the ICB that these hours have been given because of assessed need. I also had an underspend as we had issues recruiting and ended up taking on some of the care myself. I said to the ICB I would give the money back but please don’t reduce my hours. Always explain why you cannot use those hours at the moment and remind them of your child’s assessed needs and that nothing has changed with their needs to warrant reducing hours (unless they have).

PHB funds come from public money, so the NHS may reclaim unspent amounts. Some ICBs will just remove it without telling you, if you are keeping it in a local authority account. Spending must meet the agreed objectives and outcomes you wanted for your child. Always check with your ICB or local authority before using funds for anything not already approved, including holidays.

I would discuss this with the ICB in advance and explain the situations in which you might need to use agency staff. Agency care is more expensive, so your budget may run out quicker, especially if you receive a direct payment. Having this conversation upfront prevents issues later if you need agency support after initially saying you planned to employ staff directly.

Make sure you keep written records of everything agreed. Send a follow‑up email, for example: “As discussed on the phone on the XXth of March…”

Any item that should be provided by frontline services, such as hospitals, physiotherapy teams, or incontinence services, cannot be funded through a Personal Health Budget (PHB).

Unfortunately, many parents share challenges with accessing the amount of supplies needed by services such as incontinence items, but you cannot add these to the PHB.

However, if you are struggling to get what you need from existing provisions and this is leading to problems such as skin breakdown or infections, speak to your child’s health professional. They may be able to support your request for this to be included in your PHB, or for the incontinence service to provide more.

Carers should have appropriate training, including safeguarding. If you do not trust a carer (whether employed directly or from an agency), you can request a different worker or seek advice from your insurance provider. A safe, trusted care team is essential.

Some healthcare tasks can be delegated, and these should be signed off by a suitably trained and qualified nurse. Training can be delivered online or face‑to‑face, but for face‑to‑face training it is best to use a nurse who is appropriately registered and trained, as they are accountable for the competency sign‑off. ICBs are monitored by the CQC, so they will expect training to meet required standards.

I have previously received training from our community nurse and asked for the cost of this to be included in my direct payment budget. I am also in contact with nurses and self‑employed trainers in different areas of the country who can provide and sign off training, as well as a complex care company that can deliver training if needed.

Ed Kemp

[email protected]

Rachel Carluke, Family Information Officer

[email protected]

First published: March 2026

Review due: March 2027