Helpful links to further support and advice
People who have been diagnosed with scleroderma are often entitled to disability support. Your symptoms may mean that you can't work or that you have to reduce your working hours. You may need some extra help with everyday tasks and in taking care of yourself. Disabled people can claim a number of welfare benefits in the UK.
Who counts as disabled?
Under the Equality Act 2010 you are defined as disabled if you have:
'A physical or mental impairment that has a 'substantial' and 'long term' negative effect on your ability to do normal daily activities'
There are four terms here that can help you identify whether your scleroderma-related problems define you as disabled:
Scleroderma is likely to fall within the remit of physical impairment – a limitation on a person's physical functioning, mobility, dexterity or stamina. It is important to note however that the condition affects individuals in a variety of ways. It is often a progressive condition (the condition will change and develop over time) and impairments will occur at different periods of your life. This can also include the impact scleroderma has on your mental wellbeing.
A long-term condition is defined as a condition that has lasted for at least 12 months or will continue to affect the individual for the rest of his or her life. Scleroderma is a life-long condition and so satisfies this definition.
Scleroderma symptoms can fluctuate: for instance temperature changes, especially exposure to cold environments, might exacerbate symptoms. Other symptoms may be ongoing and develop as the condition progresses. It is important to note that if you can identify activities that you cannot do, or can only do with difficulty as a result of your condition, then you satisfy this definition. This is regardless of time of year, medicine you are taking or stage of your condition.
Day to day activities are those that are carried out on a regular basis. They can include activities undertaken in the working environment such as typing or reading. Whether or not you satisfy this term will depend upon the type of scleroderma you have and your symptoms.
There are a number of benefits and support schemes that people with scleroderma may be eligible for. Here are the main ones to consider:
Individuals diagnosed with scleroderma often require continuing NHS healthcare. As of October 2014 you have a 'right to ask' for access to a personal health budget – this is money for healthcare and support needs that have been identified and agreed by you and your healthcare professionals. The amount of money available varies from person to person and depends on your needs.
This works alongside your care plan – an agreement between you and your health professional to help you manage your health on a day-to-day basis.
You can use a personal health budget to pay for a range of items and services, including therapies, personal care and equipment. This will allow you more choice and control over the health services and care you receive.
Speak to your GP or healthcare provider to request a personal health budget.
If your request is turned down, you should be told why. If you wish to appeal, your local NHS should explain what to do.
Scleroderma can sometimes affect your ability to work. As a result Employment and Support Allowance (ESA) can be claimed. This is the benefit that has replaced incapacity benefit.
When applying for ESA you will have to complete a questionnaire and undertake a medical – the Work Capability Assessment (WCA). The purpose of the WCA is to find out how your illness or disability affects your ability to work.
This process should last up to 13 weeks in total. Following the assessment you will then be placed in to one of two groups:
How much ESA you get depends on:
PIP replaced Disability Living Allowance (DLA) in 2013.
When applying you must be of working age (64 years and under) and will be assessed on your daily living and mobility needs.
You have to satisfy a daily living and/or mobility activities test for three months beforehand, and be likely to satisfy the test for a further nine months following making the claim.
Like DLA, you can receive PIP irrespective of work status and can spend it as you wish. There are two components – a daily living component and a mobility component. Each component has two rates – 'standard rate' for limited ability and 'enhanced rate' to reflect severe limitation.
To receive PIP you will need to undertake 11 test activities, which you will be scored on. To obtain the 'standard rate' for a PIP component you must score eight points, and 12 points for the 'enhanced rate'. These activities consider your ability to undertake daily living activities such as your mobility, preparing food, managing your health conditions, washing and bathing, dressing and undressing and communication.
Having a lifetime DLA award will not exempt you from undergoing a PIP reassessment.
The PIP assessment resembles the Work Capability Assessment. To begin with, an independent health professional will look at your claim and accompanying medical evidence. You will usually have to attend a face-to-face interview with this assessor, and can take someone with you.
The assessor will then inform the Department for Work and Pensions who will decide if you are entitled to PIP and, if so, your rate, the length of your award and the date when it will be reviewed. You could get a short award of up to two years or a longer award lasting up to five or 10 years. If given a longer award you are likely to be contacted to see if your needs have changed.
If you are disabled, you may be able to park in restricted areas under the Blue Badge scheme. The scheme is for drivers and passengers. You can apply for a Blue Badge here or by contacting your local authority directly.
Find contact details here for advice on information about a claim you have already made for Disability Living Allowance, Attendance Allowance or Personal Independence Payments.
Disability Rights UK has lots of information and advice on all the support that's out there for disabled people in the UK. Two schemes that might be important to people with scleroderma are:
As scleroderma is a complex condition, you may be travelling to medical appointments regularly. A Disabled Persons Railcard can be invaluable. It's available to anyone who is receiving Disability Living Allowance, Attendance Allowance or Personal Independence Payments, who is registered as having a visual impairment, or is deaf or blind.
For £20 a year the railcard entitles you to 1/3 off rail fares for you and possibly another adult.
To find out more visit: National Rail, Disabled Persons Railcard
As Raynaud's and scleroderma patients need to maintain an even temperature, there may be financial support available to help you with energy bills. Speak to the Home Heat Helpline on 0800 33 66 99 (0333 300 33 66 from a mobile) or contact your energy provider, who may be able to offer a discretionary grant.