Getting started with Personal Health Budgets
We’ve collected advice from experienced parents and compiled a selection of resources for parents who are considering Personal Health Budgets (PHBs) or need some help to get started.
What is a PHB, who is eligible and how can I get one?
Personal Health Budgets (PHBs) are available to parent and carers of children with complex needs. In England, a PHB will come from the NHS through your local Clinical Commissioning Group (CCG). You may also receive direct payments from social care and education, but these are separate.
For many parents, PHBs can offer flexibility to create a package of care that works for the highly specific needs of their child.
PHBs are different from the care packages delivered by CCGs or care agencies. If you have a PHB, you will be the employer of the carers who look after your child, with the CCG providing you with the funding you will need to employ these carers. A PHB can also allow you to purchase other services and equipment to help in your child’s care. The funding from the CCG comes with a number of restrictions that vary depending on where you live.
One of the main advantages of having a PHB is that you choose what sort of care your child will receive, within the parameters set by your CCG. There are many examples of how this flexibility can work well for individual families, as explored in the next section.
There are some disadvantages to having a PHB as well. Some parents find that there is too much extra work in managing carers themselves. Others run into issues hiring carers for long periods of time, which has become an increasingly common problem since 2020.
You may be eligible for a PHB if you live in England and have continuing care. If you think it is right for your family, you can request a PHB by writing to your CCG. Links to letter templates can be found in the resources section of this article.
Advice from experienced parents
We asked three parents about their experience of having a PHB, and if they had any tips for new parents.
Having a PHB has pros and cons. On the pros side, you can pick your own team and train them in the way you want things done much easier than you could with carers from an agency. You can use money for essential resources as well as care, and you can use your own carers in hospital.
I’ve had carers with me for 5+ years so they grow with the child and skill up as necessary, for example learning how to manage stoma, catheter, and central line.
The cons of having a PHB are doing the payroll and rotas for your staff. However, in the grand scheme of things I think this is manageable.
When you are able to get carers who stay for a long period of time, having a PHB can be amazing. It’s not perfect, but it’s better than the alternatives. For example, I need someone to help get my son ready for bed, which takes two and a half hours because of his needs. This gives me time to get some work done or to spend time with my other children. I am also able to get five hours of respite once per month when the carers are consistent, giving me much needed time to recharge.
However, there are downsides. I’m having problems at the moment with my carers. One of them just left after a short period of time and this seems to have become more common because of Covid. It used to be easier to recruit staff for the long term before Covid. We’ve had carers leave with very little or even no notice recently, which is really frustrating for me, and unfair for my son, who needs some stability.
The best thing about a PHB is that it is flexible. For example, it has allowed us to take a carer on holiday with us, meaning I could spend time with my other children and safely take my son with us. We can also use our carers when we’re in hospital so I can have a break and carry on working. This works really well and couldn’t happen with another type of care package.
My main tip would be to make sure you do everything correctly, as you will be audited. Keep records, and make sure you can prove every bit of expenditure goes back to improving the quality of life for your child. I keep record books to keep track of everything, and use company to manage things like payroll and holidays for my staff.
Our family was the first in our area to have a Personal Health Budget. We requested a PHB as we were not getting what we needed from our agency package, which was too restrictive. For example, the care provider chose what nights they would cover, and would not cover weekend nights. This was a problem for us as my husband worked shifts and regularly worked on weekends – meaning we needed that weekend night cover. Also, if a carer missed a night shift, which happened regularly, we could not “bank” that missed shift to use it at a later date – we simply missed the cover, and the agency received their fee from the CCG regardless.
We were also frustrated because we were given cover for five nights a week, but they had to be used by the end of the week. This meant that we couldn’t use three nights one week and seven nights in the next, which would have been helpful. Care packages should fit the needs of families, not just the care agencies.
Getting a PHB was the best thing I ever did. Recruitment was difficult at the beginning, and it is proving more difficult recently ever since Covid. However, the flexibility of a PHB means that we can make the care package work better for our family. It is also more cost effective: we used to only get five nights, but now we get seven due to savings on agency fees.
Before you start receiving your PHB make sure you know your stuff. Know your rights, the legislation and what you are entitled to. Ask for help from support networks like the Family Tree and organisations like People Hub.
We use part of the PHB to contract a payroll team, who help with payslips, pensions, national insurance, and holidays for staff. You should also get employment insurance and make sure you factor these costs into your budget.
A good, honest relationship with the CCG and their financial team is important. PHBs work well if you’re proactive, and able to manage the extra responsibility of employing staff.
Resources that can help you
One of the best resources we have found for parents who have a PHB is My Care Budget.
My Care Budget is a wiki run by parents who manage Personal Health Budgets. It contains in depth guides, template letters, advice, and more. Visit the website to find out more >>
People Hub are another carer-led organisation who provide resources and advice about PHBs. As well as informative resources, they have a section of their website dedicated to telling the stories of people who have a PHB, which can be a useful way for parents considering a PHB to get inspiration on what could work well for their family. Visit their website to find out more >>
Law firm Irwin Mitchel have a helpful archive of template letters for families. These templates cover lots of topics, from education to deprivation of liberty safeguards. Some of these templates, including the template letter for requesting a Personal Health Budget, may be useful. Visit the Irwin Mitchel website to explore the templates >>