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Managing Personal Budget and Direct Payments when living with a Rare Disease

Katie talks about how sometimes young people living with a rare disease can have challenges in building independence and how personal budgets can support an individual in maintaining an active and social lifestyle.

In the UK, Personal Budgets are an integrative and flexible way to receive support for any needs you may have due to your rare disease.

Often young people living with a rare disease face barriers in building and developing independence. A personal budget can help you achieve this and assist you in maintaining an active and social lifestyle.

Despite this being an established benefit, many are still uninformed of the ways personal budgets can be used and the options and flexibility you can have with them. Some don’t even know they exist! But anyone living with a chronic condition that impacts their daily life has a right to be assessed.

What is a Personal Budget and Direct Payments?

A Personal Budget is an amount of money funded by your local council that helps cover any health or social care needs you may have due to your condition. After receiving an assessment of your needs, if you are eligible, you will be allocated an agreed budget based on your personalised care and support plan. The keyword is this is personal, meaning you can control the money for your care and support and you decide how it is spent. It is based on the social model of disability, enabling those to achieve more independent living and an active and social lifestyle. In Scotland, it is known as Self-Directed Support.

How does it work?

You can request an assessment from your local council which will help them decide what kind of care and support you need; how much it will cost and what you are entitled to. The eligibility criteria can differ by council and region.

It can feel intimidating to undergo an assessment – but with the right information, advice and support, it can be less stressful. Remember those assessing you are there to help! If you have any questions or need clarification, don't be afraid to ask.

The assessor will discuss with you how your condition impacts your daily life. They may ask you about medical routines and treatments you are required to follow, symptoms you experience, how it impacts your work/education, social life, and more. It can be difficult to break down your health experiences like this, but it is important to be honest about what you need and the more insight you can share, the better. If your condition often fluctuates, explain this and how your needs may change regularly. Make sure to tell them about both your good and bad days!

Your assessor will create a personalised care and support plan for you if they determine you are eligible for a budget following the assessment. Your values and outcomes should be respected throughout this plan and you should be at the centre of it.

One of the main things included within your plan will be the amount of money you are eligible for and how this can be used. You should be asked how you would like to manage your money. Budgeting can be frightening for many, but you have a choice about this.

There are a few main options:

The council can manage your budget directly for you.

  • They will arrange your care and support based on your plan.

  • They still need to make sure you are happy with the support you are receiving, however this may limit how flexible you can be with your budget.

You can request a third-party organisation to manage your budget.

  • There are several organisations which can help you manage your personal budget.

  • They can help oversee how much of your budget you are spending and what you are spending it on, and will speak to the council to arrange the payments.

  • Many find this a “happy medium”. You have more control over what you can spend your budget on, without the stress of managing the money yourself.

You can receive direct payments, also known as self-directed payments in Scotland.

  • This enables you to have full control over your budget. The council will send you the money either by paying it directly into a bank account or sending you a prepaid card.

  • You can choose how you spend the money, as long as it aligns with the outcomes in your care plan.

  • Most councils will ask for evidence on how you have spent your money every few months and you are required to keep track of bank statements and receipts.

You should be made aware of your options, but if you are not – ask!

How can I use my budget?

Those in receipt of personal budgets may not be aware of what they can use them for, so do not utilise them to their full capacity. Most people think they are strictly for care needs, but this isn't always true.

Some of the main ways a personal budget can be used include:

  • Recruiting personal assistants/carers to help support your medical and daily living needs.

  • Short stays in care homes or respite care (both for the service user or carers!)

  • Support to access the local community and activities such as day trips, sports activities, or leisure and learning centres

  • Assistance with the cost of travelling to participate in outdoor activities, day trips or to visit family and friends

  • Attending day centres

Be creative!

However, personal budgets are flexible, so be creative as you like!

They are made to be tailored in ways which support you. As long as the support meets the outcomes within your care plan; there should be few limitations on how it can be used.

For example: if you have difficulty socialising and developing friendships due to your condition, and this has been outlined in your care plan, you could use a portion of your budget towards activities to help improve your socialisation.

It could be used for specialist therapies that can help improve your symptoms; such as physiotherapy, acupuncture or counselling sessions.

Many within the community have been flexible and creative in the ways they have used their budget!

Examples include:

  • A young lady whose personal budget pays for their assistance dog. This has meant she has been able to continue living independently at home without the need for carers.

  • A skilled engineer used their budget to help purchase mechanical parts so they could build themselves a customised, high specification powered wheelchair, to help improve symptoms and maintain an active lifestyle.

  • The purchase of an exercise bike and complementary therapies. The exercise bike provides the service user with an easy way to access physical activity, which improves their medical condition and reduces their use of NHS services.

Living with a rare disease myself, my personal budget has enabled me to grow independence and achieve things I otherwise would not have been able to do. I mainly use my budget to receive support from Personal Assistants/Carers. My Mum has always been my main carer, so receiving support from a Personal Assistant has enabled us both to achieve greater independence. Mum has been able to reduce her role of ‘carer’ and begin being a “Mum” again! I have built a friendship with my Personal Assistant, rather than it being a traditional carer relationship. It has given me the opportunity to experience life as a young adult, without having to rely on my Mum to provide me with the assistance I need. My carer and I have been on weekends away together, to concerts and are even going on holiday abroad later this year!

Personal Budgets can help greatly improve the quality of life for those living with rare and chronic conditions, so it’s important for young people to be made aware of the options available to them.

You can find more information regarding Personal Budgets and Self-Directed Payments and how on the NHS Website or through your local authority.



LinkedIn @katiecallaghan


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