Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

Page 1 of 4

Personal Health Budgets A Personal Health Budget (PHB) is a form of financial support that is made available to people with an identified ‘primary health need’ requiring ongoing support and care. A primary health need means that the majority of your care will focus on addressing or preventing health concerns. PHBs are fully funded by the NHS and are not means-tested. If you’re the person receiving care, PHBs will give you greater control and flexibility over what your care involves and who provides it. This factsheet aims to help you understand what PHBs are, and how to get one if you think you are entitled to one. Before applying for a PHB, you need to be receiving NHS Continuing Healthcare (CHC). Your care can either be fully funded by a CHC or jointly funded by the NHS and Social Services.

What are PHBs? The idea is that PHBs give you more control over your healthcare and support needs, and how these needs are met. If you’re eligible for a PHB, you’ll work with your healthcare providers and your local Clinical Commissioning Group (CCG). You’ll put together a care and support plan that should meet your health and wellbeing needs, placing you in a central decision-making role. Essential to making a PHB effective is a personalised care and support plan. Discuss this plan with your care team, as they should help you identify your needs, as well as the goals you’re hoping to achieve. You can expect the following when you’re receiving a PHB:

you should be placed at the centre of all decision-making and the development of your care and support plan

you should be able to agree with your healthcare professionals about the outcome of your plan, including the meeting of your identified health needs (and learning needs for children and young people with Education, Health and Care Plans)

you should receive an indication of how much money is available to carry out your plan, and there should be enough in this budget to allow for the agreed outcomes to be achieved

you should have the option of how you manage the money, including options for direct payments, a notional budget, a third party budget or a combination of these options

you should be able to use the money allocated to your budget in a way that makes sense to you, as long as it is agreed in your personalised care and support plan.

Putting a PHB in place should be a positive experience. You should have as much control and say in the process as you feel comfortable with. PHBs require the NHS and social care organisations to work with you, to agree a personalised plan that both you and your care team are happy with. The NHS will let you know how much is available for your

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

Page 2 of 4

healthcare needs and your CCG will involve you to agree on how to spend the money based on your assessment.

Who is eligible? Adults who are eligible for or already receive NHS CHC, as well as children with continuing healthcare needs have the right to a PHB.

How do I get one? If you would like to apply for a PHB, talk to your local care provider (neuromuscular care advisor or GP) about it. You’ll get the money for your PHB through the CCG so you’ll have to speak to a local healthcare professional. If you are currently not getting NHS CHC, ask any NHS professional or doctor to assist you to start the process.

How will it be paid? You can manage the money for your PHB in a few different ways.

Notional budget This means no money changes hands between you and the NHS. You’re entitled to information about how much money is available, and can talk to your team about the different ways to use this money to meet your needs. Once this is agreed, the NHS team will arrange this for you.

Third party budget A different organisation or trust holds the money for you and supports you in deciding what you need. Once you and your local CCG have agreed the amount, the third party organisation will manage the spending on the agreed care and support services.

Direct payments You receive the money directly to spend on the agreed care and support services. You have to have a separate bank account to receive direct payments, and you must be able to show what you’ve spent the money on. It’s up to you to spend the budget and manage the services yourself.

You can choose how you’d like your budget to be paid, and this can include a combination of the above options. The care and support plan you develop with your NHS team should include an outline of how you’ll spend your allotted budget. This needs to account for all the services you’ve agreed you need to maintain your health and wellbeing. If you follow this plan correctly, your money shouldn’t run out. If you’re finding it difficult to manage your budget or think you’ll have difficulty managing your spending, think carefully about which of the payment options above will work best for you.

Are there restrictions on how I can spend it? Yes. You can use your budget flexibly for a range of different services, all of which you’ll have discussed with your healthcare team when you put together a plan for your budget.

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

Page 3 of 4

You cannot however use the budget for emergency or primary care services (which includes seeing a GP). You cannot put your own money into a PHB.

What if my needs change? Your care and support plan should be reviewed regularly to take account of how your needs may change. If you’re unhappy with an element of your plan, you can ask to have your plan reviewed so this can be changed. You and your care team need to agree any changes to your care and support plan before you can start spending your PHB on any new or altered services.

Do I have to have a PHB if it’s offered to me? No, you don’t have to alter your current care plan to include a PHB. Everyone who is eligible needs to be aware that they have the choice of allowing the NHS to continue managing their care, or to manage it themselves through a PHB. If you’re offered a PHB, you can choose to continue having the NHS manage your care, and you still have the right to get a PHB later on if you change your mind. If you decide against a PHB, you still have the right to a discussion with your care providers about how your care needs are currently being met, and about the different ways these needs can be met if you feel changes need to be made.

Can I change my mind about having a PHB? Yes. If you feel that having a PHB doesn’t work for you, or no longer works for you after you’ve had one for any period of time, you can give up your budget and return to having the NHS manage your care and support.

What if I am denied a PHB? If you are denied PHB, then you can appeal to the CCG and ask for your case to be reviewed, asking them to explain in writing the reasons for this. The process needs to be transparent. If all local dispute procedures fail to resolve the problem, you can request your case go before an Independent Review Panel. If you are still not satisfied, you can refer your case to the Parliamentary and Health Service Ombudsman. If you’re denied a PHB and want to appeal the decision, you can contact Muscular Dystrophy UK’s advocacy team for support and advice. Disclaimer

While every reasonable effort is made to ensure that the information in this document is complete, correct and up-to-date, this cannot be

guaranteed and Muscular Dystrophy UK shall not be liable whatsoever for any damages incurred as a result of its use. Muscular

Dystrophy UK does not necessarily endorse the services provided by the organisations listed in our factsheets.

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

Page 4 of 4

Here for you The friendly staff in the care and support team at the Muscular Dystrophy UK’s London office are available on 0800 652 6352 or info@musculardystrophyuk.org from 8.30am to 6pm Monday to Friday to offer free information and emotional support.

For more information on Personal Health Budgets, please contact the Advocacy Team.

If they can’t help you, they are more than happy to signpost you to specialist services close to you, or to other people who can help. www.musculardystrophyuk.org