Respite Care
Taking time for yourself to rest and recuperate can be challenging for carers. It can be hard to let go and let someone else take over for a while. Sometimes people tell us they feel guilty for needing respite. It is completely natural to need to take a break and have time for yourself. Providing day-to-day care as a partner or parent can be tiring and it is important that you can take a break from caring not only to stop you becoming exhausted and run down but because you have your own life and finding balance is beneficial for everyone. It is important to recognise that caring draws on our physical, mental and emotional reserves and if we don’t keep these topped up then caregiver strain can set in.
There will be a range of respite options in your local area but they can take time to access and arrange. Take a bit of time to work out what is available and what might work for you. The person you care for may also have feelings about what is the best option for them. Sometimes, a trial can be arranged and this can help to manage fear of the unknown. Respite care can include:
Replacement care in your home (day, evening or on the weekend)
Overnight care in your home or elsewhere
A ‘short stay’ break for your affected child or relative, including care.
Asking for an assessment from your Local Authority
Although you can pay for respite yourself, you are entitled to ask for an assessment from your local authority. Having an assessment may lead to respite being provided by the local authority. There are two types of assessment you can ask for:
A Needs Assessment for your child or relative with a rare condition
A Carer’s Assessment for yourself
Asking for respite does not mean you are saying you cannot cope. You may need respite to meet the needs of your other children or family members, to look after your home, or have some time for yourself to recharge so that you can carry on looking after your child or relative well.
Caring for a disabled child
Some children with a rare disease or condition are also a disabled child. As their carer you have the legal right to a break from caring under the Breaks for Carers of Disabled Children (Wales) Regulations.
Caring for a child with a life-limiting or life-threatening condition
Some rare diseases are life-limiting or life-threatening. The children’s hospices in Wales are Tŷ Gobaith (Hope House) in North Wales and Tŷ Hafan in South Wales. They provide a range of holistic and bespoke support for children and their families when the diagnosis means they are not expected to live beyond 25 years of age. You can ask a health or care professional to make a referral or you can refer your child directly. The referral panel will consider medical information provided by your child’s GP or specialists. You are not required to pay for these hospice services.
Other sources of respite support
Respite Association
The Respite Association can assist with funding for short term respite using qualified respite carers. Most grants are limited to a few hundred pounds but can be combined with other funding options. You can apply directly but most applications are sent in via caring organisations, for example Carers Trust North Wales.
https://respiteassociation.org/
Carers Trust North Wales
If you live in North Wales, this organisation can work with you to design the right respite care package for you and the person you care for regularly. Through their Crossroads Care Services, they can provide trained Carer Support Workers to provide help with personal care, transport to appointment and clubs, administer medication among other things. There is the option of a chargeable service, Gwalia Care, however you may be eligible for funding from your local authority.
https://www.nwcrossroads.org.uk/
Mirus
Mirus are based in South Wales and can provide respite breaks if you’re funding it privately and they also work with local authorities to provide funded respite.
https://www.mirus-wales.org.uk/how-we-can-help/respite/
Over the Wall
Over the Wall provide respite camps for affected children and also camps for their unaffected siblings and the whole family. These are currently operating virtually.
Are you looking for more direct support, or want to belong to a wider rare disease community?
Our RAREhub and RAREnavigator services can help - in a way that suits you and your family.