With the coronavirus pandemic came much uncertainty, and families caring for relatives who have learning disabilities lacked adequate guidance.
During the coronavirus pandemic many families supporting relatives with a learning disability have felt at risk of being in a crisis situation should they themselves become ill. It has been difficult for them to know how alternative support might be arranged or, if available, given in a safe way due to spreading the virus or a person’s support needs being understood by an unknown paid carer. Everything was up in the air.
A complex set of circumstances
Government guidance focused on practical matters such as getting shopping delivered or advising people to self-isolate if ill. There did not seem to be advice for family carers should they become too ill to carry out their caring role and potentially risk their relative becoming ill too.
"Equally important is giving family carers and people with learning disabilities some reassurance that other people and support services are able to step in..."
It was a complex set of circumstances that could lead from bad to worse. People were potentially dying at home through not knowing how to get the help they needed. This led to Together Matters quickly producing practical information for family carers (Emergency planning for family carers, supporting an adult relative with learning disabilities, during the coronoavirus outbreak) covering what to do in situations that might arise. This includes advice on:
- Coping with staying at home and socially isolating
- The main carer, or others who provide support, becoming ill
- Their relative with learning disabilities becoming ill
- Their relative needing to go to hospital
Some of the information for these scenarios is specific to the coronavirus pandemic but is based on an approach I have been advocating for many years to supporting families to make robust emergency plans as set out in Making a plan for emergencies. These included:
- Get others to help with the planning wherever possible which might be family, friends, neighbours, paid workers or a local carers’ centre
- Think about what you are most worried about, share this with others and make sure the planning puts things in place to address the concerns
- Make a list of essential information such as contact details of people and services that others might need in an emergency
- Make sure there is person-centred information available for others who may need to step in to give support
- Share the information with others and build a support network, formal and/or informal, who might help in a variety of ways should an emergency occur.
Why plan for emergencies?
The main purpose of any emergency planning is to put as many things in place as possible to reduce risks and prevent emergency situations becoming a crisis.
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Equally important is giving family carers and people with learning disabilities some reassurance that other people and support services are able to step in and help when things go wrong. As we try to move on from this pandemic families are going to need this reassurance even more than ever. Supporting families to plan for emergencies should become a central part of planning and delivering support. Let’s make sure they get written!
If you are a family carer have a look at the two versions of the emergency planning guides and see which would be most useful for your family or use elements of both. Ask for some help from someone, such as a carers’ organisation or a social care practitioner, if you want support to think about the options.
Christine Towers is the Director of Together Matters, an organisation founded upon the view that working collaboratively best enables people with learning disabilities and their families to live their best lives.
The emergency planning resources are all available as a free download at https://www.togethermatters.org.uk/resources-and-information