Accessing social care for EB

If you need extra support in your daily life due to your EB or any disability, then you are entitled to a free assessment carried out by the social work department. This is to help decide whether you need social care support for any of the following tasks: 

• Help with washing and dressing. 
• Regular meals and better nutrition. 
• Access to mental health services. 

You have an important role in an assessment by saying what you think will best meet your needs. Think about your health and your family circumstances, what you find difficult, and what could be easier. What you get will depend on your individual needs and how the council meets that need in your area. 

Northern Ireland 

If you are a hospital inpatient the quickest way to access support is for the hospital to arrange a package of care before you leave.  

If you live at home and need a package of care the way to access this is via District Nurse or via GP.   

Support to stay in your own home | nidirect –this link is the best and gives links to the regional Trusts who assess and provide the packages of care.

Our EB Community Support Team can support you before and during your assessment, to help ensure the social work department understand EB and your needs. 

A financial assessment is only needed for an adult requiring a care package and not for a child. 

Once a care assessment is complete, a ‘means-test’ assessment is carried out by the council that looks at your income, savings, and other assets. Some community care services are free, but for some the council might ask you to pay a charge. The council will usually assess your income and savings to see how much you can afford to contribute towards your care package. 

Alternatively, you can also decide to pay for services privately with your own money.  

EB carers can also have assessment to help access respite. Under the Care Act 2014, every Local Authority has a legal duty to carry out a needs assessment. This must be done either on request or when it becomes clear a carer may need support. 

You can find out more about carers assessments on the NHS website. 

If the carer has been advised they do not qualify once the assessment has been completed, their local council should give free advice where the carer can go to for help in the local community. If this does not happen, you should ask to be signposted to places that can help, and for feedback on why you did not meet the criteria. 

Once a local authority has decided on your personal budget, you can choose to receive some or all this money in the form of direct payments. The money will be transferred directly to you so that you can arrange and pay for the support you need, instead of having the services organised by the local authority. 

You can apply to receive direct payments on the Government website.  

Alternatively, you can choose to let the local authority take responsibility for your care arrangements and not take the direct payment.  

Most authorities make the direct payment straight into your bank account every four weeks. You will need to open a new bank account, so your direct payment is stored separately to your personal funds. 

If someone can’t manage their own finances – for example, if they lack the mental capacity – it’s possible for someone else to be appointed to manage direct payments on their behalf. This appointed person will need to be approved by the local authority. 

Direct payments are paid specifically for people to buy the services – such as carers or equipment – they need. They are not a form of income, so do not affect benefit entitlement or income tax. 

If you accept direct payments, but then change your mind, you can stop them at any time. Equally, you can switch to direct payments at any time instead of having the local authority arrange your services. 

If you decide to move from local authority arrangements to organising your own, the local authority has a duty of care to ensure the current services remain in place until you have organised your own. 

You can only spend the money on care that has been agreed in your care plan and you must keep records to show exactly how the money has been spent. The local authority remains responsible for monitoring your needs and checking that they are still being met. 

Penderel’s Trust Service can offer you further support with direct payments and recruitment. 

In Scotland, whoever is assessed as needing personal care will get it for free. You can choose to have the care provided by the council or to get direct payments from the council to arrange your care yourself. 

In England and Scotland, it’s mandatory for local councils to offer a personal budget as an option to all people who have been assessed as needing care services and qualify for local authority funding. In Scotland, the system is called self-directed support. 

In Northern Ireland, direct payments are widely available, but personal budgets managed by the local authority are at an early stage of use and may not be available in all areas. 

In Wales, personal budgets are not used, but direct payments (also known as self-directed support) are available. 

Your eligibility for NHS continuing healthcare depends on your assessed needs, and not on any specific diagnosis/condition like your EB type. If your needs change, then your eligibility for NHS continuing healthcare may change as well. 

You should be fully involved in the assessment process. You should be kept informed and have your views about your needs and support taken into account. Carers and family members should also be consulted where appropriate. Our Community Support Team can also help you during this process. 

The assessment process usually starts with the completion of the checklist tool by a nurse or any other healthcare professional. This identifies whether you need to have a full NHS continuing healthcare assessment. If successful, you’ll then go on to have a full assessment. It should take no more than 28 days to complete the full assessment and to make a decision. A full assessment looks at your physical and mental health and social care needs.  

A team of all the relevant health and social care professionals will meet to look at the evidence, complete a Decision Support Tool, and make their recommendation on whether you’re eligible. 

If approved, you will be notified of your care package. At this point you can ask for a personal health budget, which can give you more choice over the services and care you receive. 

The package of care and support that’s agreed on will be reviewed after three months and then at least every year. The primary purpose of the review should be to make sure your care plan is still suitable and meets your needs. It’s expected that in most cases there’ll be no need to reassess eligibility. 

If your care needs change in the future, your funding arrangements may also change. You have the right to challenge this decision. 

Individuals can access a combination of funding through social care and health. NHS continuing healthcare isn’t means tested, so it doesn’t depend on how much money you have. Instead, it depends on how your illness affects you and what help you need. 

If you’re receiving NHS continuing healthcare and living in your own home, your Attendance Allowance, Disability Living Allowance (DLA) and Personal Independence Payment (PIP) remain the same. 

If the NHS is paying your care home fees, then the care component of DLA and the daily living component of PIP and Attendance Allowance will normally stop after 28 days. Your pension shouldn’t be affected. 

NHS continuing healthcare is available in England and Wales. 

In Northern Ireland, continuing healthcare is available, but it isn’t as easy to access and the assessment process is different.

Scotland stopped using NHS continuing healthcare in 2015 and replaced it with a scheme called Hospital Based Complex Clinical Care . If someone in Scotland received NHS continuing healthcare before it was stopped, they will continue to receive it so long as they’re eligible. If you’re in Scotland and you need to be cared for in hospital, this is free under the Hospital Based Complex Clinical Care scheme. 

To get help with paying for social care in Scotland, including paying for a care home, you will normally need to have an assessment from your local council. You can ask your GP or nurse about this, or you can ask the council for an assessment yourself.