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Looking after yourself

Adult siblings of disabled people can have a hard time looking after themselves. Many have experienced a life-time of coming second (third, or fourth…) to someone else’s needs. Now, more than ever, you must ‘put your own oxygen mask on first’ and avoid becoming burnt out and ill.

Face-to-face contact

In Scotland:

Two households of up to 8 people can meet in outdoor spaces, including private gardens, providing they stay 2m apart. People are urged to stay local.

In Wales:

Two households can meet outdoors, including private gardens, providing they stay 2m apart. People must avoid travelling more than a 5 mile radius from their home.

In England and Northern Ireland:

Groups of up to 6 people from different households can meet in outdoor spaces, including private gardens, providing they stay 2m apart.

Face coverings

Some siblings may be worried their disabled brother or sister will be required to wear a face covering and that they may not tolerate it. This is not the case. Wearing face coverings is not compulsory. “People are advised to wear face coverings in enclosed public spaces where social distancing is not possible or where you are more likely to come into contact with people you do not normally meet. For example, on public transport or in some shops.” Visit gov.uk/coronavirus for full details.

Care homes

Siblings whose brother or sister has a severe learning disability and behaviour that challenges may be very concerned about the lack of face-to-face contact. You may be very worried about the detrimental effect on your brother or sister’s wellbeing and behaviour. Care homes and supported living providers should not have blanket policies that ban all visitors. Each person’s need and risk should be individually assessed. Read this advice from the Challenging Behaviour Foundation and return to their website regularly for the latest advice in this area

Public Health England has released this guidance to advise care homes on personal protective equipment (PPE)

Keeping in touch

Sibs’ Trustee and journalist Saba Salman writes about her experiences of contact with her sister during this time in this article. If you normally have face-to-face visits and you’re new to keeping in touch from a distance, here are some ideas:

Video calls:

Ideas for video calls:

  • Catch up over meal times – have a virtual breakfast, lunch or dinner together
  • Sing one song a day together – work your way through a favourite album or playlist
  • Dance or make up your own fitness workout that you can both do, such as chair exercises
  • Buy two of an item (such as bubble mix) and send them one. Over the video call, blow bubbles together
  • Read them a favourite story, or make up stories together
  • If a live call is hard, try recording short videos or sound recordings and sending them back and forth to each other

Ideas of small things to send in the post:

  • Postcard with a word or picture on it that makes them laugh
  • Favourite printed photograph of the two (or three or four…) of you as siblings
  • An item of clothing that might bring comfort, such as a scarf that smells like you
  • Wrap up a favourite bar of chocolate
  • A sensory item, like soft scented hand cream

If you’re both able to, here are some other ideas of free things to do online together:

Isolating together

Some siblings may be living, self-isolating or shielding at home with their disabled brother or sister. This might be your usual living situation, or you may have chosen to be together at this time.

Shielding – further advice and support:

New advice for people shielding from 31st May: “If you live alone, you can spend time outdoors with one person from another household. Ideally, this should be the same person each time. If you do go out, you should take extra care to minimise contact with others by keeping 2 metres apart.” Read more information here.

Does your brother or sister have a learning disability and/or autism? Check out these resources, which include information and resources for coping with day-to-day life and ideas for activities too:

And for social care guidance:

Financial support

  • If you or your disabled brother or sister need extra help to pay for something there are many grants, funds, and charities that may be able to help – read more here
  • The government has confirmed that providing emotional support counts towards the Carer’s Allowance threshold of 35 hours of care. This can include sibling carers whose only contact with their disabled brother or sister to provide such emotional support, is through phone calls and social media. Read benefits advice from Carers UK for more info
  • Further general information from the government on coronavirus and finances (for example – unable to work, unemployed, changes to benefits, on furlough) is available here

Helping your brother or sister to understand the situation

It is very difficult for siblings to see their disabled brother or sister upset and confused by a situation they cannot understand. Here are some resources that may help:

  • Keep Safe is an easy-read website with information and UK guidance about coronavirus
  • Learning Disability Wales have easy-read information and resources in English and in Welsh
  • Hft have produced a video guide to coronavirus
  • Dimensions have listed all their coronavirus easy-read guides, social stories and Books Beyond Words here, explaining the virus, why people can’t visit and going out (e.g. to use supermarket)
  • An easy-read guide to avoiding scams during the outbreak, from Inclusion North
  • Sign Health have daily update videos in British Sign Language (BSL) with subtitles

Changes to care packages

Many adult siblings will have seen major changes to their disabled brother or sister’s day-to-day care and support, as normal social outings and activities are no longer possible. People with a ‘specific health condition’ (including learning disabilities/autism) that requires them to leave their home to maintain their health (e.g. exercise in an open space 2 – 3 times a day) can do so. See this guidance for more information.

Some siblings may have seen other changes in their brother or sister’s care package, due to the Coronavirus Act.

The Coronavirus Act 2020 is a law designed to help the UK cope with the pandemic. It allows a number of changes to current rules, including changes to local authority provision of care and support packages in England and Wales. This is to allow local authorities to spread resources more evenly and respond to the most urgent cases.

Key points:

  • Local authorities must still follow the relevant care law (in England this is The Care Act 2014 and in Wales this is the Social Services and Well-being Act 2014)
  • Before any changes take place, local authorities must prove that to continue to follow the relevant care law would put lives at risk (for example, by proving that they no longer have enough carers)
  • Local authorities must report this decision to the government and tell service users and care providers

The Coronavirus Act only affects certain parts of care law, not all. Local authorities don’t have to:

  • Complete detailed financial assessments (but they must make sure that any charges are fair overall, and they must complete an assessment after the crisis is over)
  • Complete detailed needs assessments (but they must still respond as quickly as possible, respect a person’s human rights and respect their needs and wishes)
  • Complete detailed care and support plans (but they must do enough planning to make sure human rights are respected and lives are not put at risk)
  • Meet all eligible needs (but they must meet the most urgent needs)

Read the full Coronavirus Act here. An easy read version is available here.

A video guide is available here.

Read the guidance for local authorities on Care Act easements here

What next?

Adult siblings – you can report your experiences of getting care for your disabled brother or sister during the pandemic

In Control and Disability Rights UK have set up a register to record people’s experiences of getting health, social care and treatment for Covid-19 during the time of the pandemic. They want to hear the experiences of disabled people and people with long-term health conditions, their carers and family members, both good and bad, of getting support. Report your experience of getting care or treatment during the Coronavirus (COVID-19) pandemic here.

Going into hospital

Emergency planning

No sibling wants to think about their disabled brother or sister being admitted to hospital. It can be an unbearable thought. But it is worth remembering that thinking about it does not make it more likely to happen, it can only help you to be more prepared.

At this time, some adult siblings of people with learning disabilities and/or autism are supporting their brother or sister to put an emergency plan in place. We acknowledge that this is not an easy topic for siblings to face and can be very difficult to raise with parent(s) too.

Resources that may help:

Hospital visiting

Visiting patients in hospital is banned, except in extreme cases. You will need to check with the hospital and speak to the nurse in charge of the specific ward your brother or sister is on, to make any arrangements. This visitor guidance for hospitals in England, for example, does state that one visitor is permitted if they are “supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed”.

Hospital care

Mencap have produced information for healthcare professionals, to help treat patients with a learning disability during the coronavirus outbreak. If you are worried about the level of care your disabled brother or sister is receiving and you feel it is a safeguarding concern, remember that you can still report this to the hospital safeguarding team.

The National Institute for Health and Care Excellence (NICE) have updated their guidance on COVID-19 and critical care (also known as intensive care). The new guidance states that people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism should not be screened using the usual Clinical Frailty Tool. Any decisions about whether a person with those conditions such be admitted to critical care, should be made on an individual basis. You can read more about these changes here and read the full guidance here.

Radiant research have produced the following guidance documents on COVID-19 and learning disability (also referred to as ‘intellectual disability’):

Do Not Attempt to Resuscitate (DNAR) decisions

Some siblings have told us that the coronavirus outbreak has prompted their disabled brother or sister’s care home, supported living setting or GP to ask them about a DNAR decision. This can be extremely upsetting for siblings and can feel very ‘out of the blue’.

It is important to remember that blanket policies about DNAR decisions cannot be made. For example, a doctor cannot say that all people with a particular condition should have a DNAR in place. Any DNAR decisions must be made on an individual basis, and involve the individual and their families.

More information:

Bereavement

Sibs offers heartfelt condolences to all adult siblings who are grieving during this incredibly difficult time. At a time when you most need company and a hug, you may not be able to have this. Feelings of loneliness are heightened. For siblings who may have spent a lifetime putting their needs aside for the benefit of others, this is especially hard. Some siblings will also be supporting a disabled brother or sister through loss and grief too.

Rory Kinnear shares his experiences in this Guardian article “My sister died of coronavirus. She needed care, but her life was not disposable”

Coping with grief during the coronavirus outbreak:

Coping with the loss of your disabled brother or sister

Issues specific to the loss of a disabled brother or sister:

  • Experiencing disenfranchised grief i.e. the way you grieve is not considered socially acceptable or the grief isn’t considered worth it. People may say things like: ‘Her health has always been bad…’ ‘He wasn’t expected to have a full life expectancy…’
  • Loss of role and identity – You may have been one of the main caregivers for your brother or sister and may feel a loss for the caring role you undertook
  • Anger – You may feel very angry that services or treatments were not available for your brother or sister, or that he or she was treated with less dignity than others in hospital or a care home
  • Guilt – You may feel guilty about things like – how much time you have spent with your brother or sister; resentment about care tasks; relief that you will not have to care in the future; having survived…

Coping strategies:

  • Give yourself time. There is no set time or pattern for grief and it varies for everybody. Be patient and take the time you need, without feeling pressure
  • Find a way to express your grief. For some siblings, this will be talking to a close friend. For others, this will be keeping a diary, or using music or art. Some will put together a memory box. Find a way that works for you. There is no ‘right’ or ‘wrong’ way
  • Keep healthy. Looking after your physical health is a good way of keeping you mentally healthy. Take regular exercise and make sure you eat and sleep as well as you can

NHS coronavirus bereavement helpline

Call 0800 2600 400 (open every day from 8am – 8pm). The nurses on the helpline can give you advice, guidance and practical support during this difficult time.

You are not alone. Click here for more information and coping strategies.

Remember you are not alone during this time – stay in touch with us on Twitter, Facebook and through our mailing.

You can download all of the above information as a PDF here: Sibs - coronavirus - useful information for adult siblings.

This page was last updated: 3rd June 2020