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Carers and Medical Supplies

Carers and Medical Supplies

Last updated 06/11/20

Disclaimer: Information and advice regarding Coronavirus (COVID-19) is rapidly changing. We are updating the website regularly and aiming to focus our information on areas that are of most significance to people living with EB. As the situation evolves, information will vary across the four nations; you should always consult and follow the advice given by your national government, the NHS and other regulatory authorities.

If you need any further support, please contact the DEBRA EB Community Support team on 01344 771961 and select Option 1.


Back up plan

Think about what you would do if your usual carers were not available – Carers UK has good advice on creating a contingency, or back up plan . If you care for someone who has EB, you can think about the support needed if you become unwell and have to self-isolate.

Keep your 'I have EB card' to hand. If you require medical attention, it is useful to have this and make health professionals aware that you have EB, along with contact details of your EB team.

Caring for others during the pandemic

Carers UK have a helpful page detailing the latest Government guidance regarding carers and some common questions you may have and this link outlines the guidance for care provisions and the steps carers should take to protect themselves and those they care for. 

NICE has now produced a set of relevant COVID-19 rapid guidelines, including one that focuses on dermatological conditions treated with drugs affecting the immune response.

Supporting someone else can be stressful. Time to Change offer some great advice on maintaining mental health whilst supporting others during the pandemic. If you are feeling lonely and want to chat with other carers, Mobilise are hosting regular opportunities to join other carers for a virtual cuppa.

Carer’s Allowance

If you are caring for someone for 35 hours or more per week, you may be eligible to receive a Carer’s Allowance of £67.25 per week (2020-2021).

You will need to meet certain criteria to be eligible for the payment (e.g. age, residency) but we encourage all carers – especially informal carers, such as a parent looking after a child – to consider applying.

This allowance is not means-tested; however, there is a limit to how much you can earn from work and still be entitled to the payment, which may also be taxable.

Read the Carers UK guidance about carer’s allowance for more information.

Carer’s Assessment

Any carers over the age of 18 can ask for a free carer’s assessment. The carer’s assessment is essentially a wellbeing check to look at how well you are coping whilst looking after someone else.

By arranging a carer’s assessment, you can explore what your needs are and what different types of support are available to you – from emotional assistance to practical help, including gym memberships for stress relief, help with gardening and housework, getting extra help from a paid-for carer and more.

The carer’s assessment is managed at the local level, so you will need to contact your local council to request the assessment. If you are a young carer (under the age of 18), you should still speak to your local council to see what additional support they can offer.

Visit the NHS website for more information about the carer’s assessment.

Carer’s Rights

Working in paid employment whilst caring for someone else can be challenging and it is important to know your rights.

You should firstly talk with your employer about your situation, letting them know as soon as possible, so that you can agree a plan in case your work is disrupted or your work pattern needs to be changed. You may have a statutory right to request flexible working if you have been with your employer for more than 26 weeks.

All employees are entitled to ‘dependent leave’ in emergency situations; this may be paid or unpaid and is dependent upon your employment contract. You also have the right not to be discriminated against due to your association with someone who is disabled (i.e. long-term physical or mental impairment causing a negative effect on performing routine activities).

Visit the Carer Support Centre for more information on your rights as a carer.


Medical supplies

Please do not stockpile medicines and bandages; these will still be available to you in the normal way. 

As GPs are very busy it can take a little longer to receive your prescription, so the advice is to request your repeat prescription two weeks in advance.

Many pharmacies throughout the UK offer prescription delivery services. It would be worth ringing your regular pharmacy to see if they offer this service.

Bullen Healthcare has great experience supporting the EB Community and has done so for many years. They consistently hold a large stock of products and supplies used by the EB Community and have even created a dedicated team to help with all EB queries and orders.

Bullen is accepting new registrations from the EB Community who require dressings alongside other medication deliveries. This service is also available to the whole household of someone living with EB requiring dressings.

To contact their EB team directly, please phone: 0800 756 2428 08:00 – 18:00 or visit their website if out of hours:

The Government are advising that certain groups of people, including the clinically extremely vulnerable, practice stringent social distancing measures. Visit the website for more information on staying alert and safe (social distancing).

Can you ask friends, family and neighbours to help with online services? You may be able to have your prescriptions and shopping delivered. The website also has advice on home care provision.

If you need any further support, please contact DEBRA EB Community Support team on 01344 771961 and select Option 1.