By Sini Lucas. Dorset Advocacy, Carers Representation Coordinator
A little bit on Human Rights from a Family Carers Representation Coordinator.
My role often focuses on encouraging, supporting and ensuring that Family Carers are able to share and voice their experiences, concerns and make suggestions to how services in Health and Social Care are delivered and planned. One of the aims of this work is to minimise the effects that the Family Carer’s caring role has on other important parts of their life… such as restricting the carers Right to privacy and family life, home, and correspondence (Article 8, Human Rights).
We often hear more about how the person needing support may be restricted and ensuring their wellbeing and rights are upheld, but less about the Family Carers having significant restrictions to their private and home life, which they may not express out of love for the person they care for or out of not wanting to seem like their loved one is a burden to them.
Learning Disability and Autism Family Carers have often cared for their loved one from day one, until the day the caring comes to an end. They often continue their caring role even when things become very difficult, because there is no other option, that they see suitable or acceptable. Many of the Family Carers therefore have lived much of their lives sharing their homes with another adult family member, a family member requiring much of their time, support, love and attention. Sometimes the cared for (and often the supporting services and professionals involved) don’t share an understanding of how much the Family carer has given to continue to look after them.
How often do we stop to think about a married couple who are approaching retirement but have never had a home life without another adult living with them (as an example, one of the carers’ sibling with severe Learning Disabilities), who has needed support and not understood issues of privacy or intimacy?? They have given up their privacy and home to support someone else for life, and yet are struggling to secure support for having respite care and having to learn how to self-employ a person to secure some breaks for themselves and for the cared for person.
It is just one example of so many scenarios of personal home life and privacy being restricted for usually years and years, and you may now say… “but carers get paid and get breaks from caring… ”
It is not so in current climate… Carers Allowance is the smallest benefit going and several campaigns have happened before to try and change this. As for getting breaks, for those who have had a Carers Assessment, breaks / respite from Caring does happen where possible but the current Crisis in caring Services has unfortunately had a significant impact on availability of respite care to support Family Carers.
Family Carers often do not see themselves as Carers until perhaps the impact of their caring role is starting to really affect their family life, finances, or own wellbeing. Many Carers have
not even contacted services for support for them as a Carer, until one of these scenarios happens.
As a Family Carers Representation Coordinator, I try to encourage families to be vocal and feel supported in raising their needs as Carers and as a Family. This in turn will contribute to recognition and working toward supporting Carers rights as carers (Care Act) and as humans (Human Rights).
Out of love, they are indeed choosing to care for someone in their family even after that person is no longer a child, and even after the time that for most other families would have meant moving on to a next phase of family life (as an example, adult children moving out, moving to another town from your siblings, having your own families, becoming a grandparent, retiring and getting out and about more as a couple, or as an individual looking for a new relationship).
This, however, does not mean (should not mean!) that they are choosing not to have a life outside of their caring role, they have not chosen to abandon their right to having privacy and space, own interest, and personal life choices to support their wellbeing and health.
The services and support from Central Government and local Health and Social Care need to listen to families and their needs and develop services that don’t just recognise these rights but actively provide to ensure that Family Carers are supported to continue be able to live fulfilling lives while providing support and care to their loved ones.
If you’d like to find out more about Carers Representation in the Bournemouth, Christchurch, and Poole area, contact Sini Lucas
Email: [email protected]
