'Caring can be a mixed blessing', says Fatima Khan-Shah, Chair of Investors in Carers, as she introduces a Carers Charter - an initiative designed to help carers and organisations understand each other in the pursuit of improved support for carers, their families and friends. This is the latest guest blog to be posted during our Carers Strategy call for evidence.
On the one hand you are trying to maintain the health and wellbeing of a vulnerable person which can at times take over your life. On the other, it’s one of the most rewarding things you can do for another human being. It does make life complicated!
I have been a carer for nearly a decade, trying to manage a family with two young children and caring for someone with complex needs who cannot do anything for themselves. To say we have had fun and games wouldn’t cover it!
As carers we can give up our independence, our income and even our identity at times. I didn’t get an induction when I started my caring role - it just happened. This person was falling and I caught them. Surely, that’s what anyone would do for a loved one?
The problem was that I didn’t know what I was letting myself in for. I didn’t know about home care, direct payments, or the difference between an occupational therapist and a speech and language therapist.
Navigating health and social care can be difficult at any time, but now the system is facing its greatest challenge. We as carers save the economy up £119 billion - nearly the entire budget of the NHS - and yet when it comes to the system acknowledging us we are at times on the side lines waving and shouting for people’s attention.
The early years of my journey as a carer were frustrating to say the least. I lost myself trying to fulfil what I thought was my duty as a carer, putting myself last. What helped me was speaking out about my experiences, in a constructive way to try and influence policy and social change for people in similar situations to me.
Through my voluntary work as a patient and carer representative, I was asked to speak at North Kirklees Clinical Commissioning Group’s governing body meeting about my experience as a carer.
I used this as an opportunity to highlight some of the issues I experienced but also suggested ways this could be improved. I was asked if I was interested in becoming part of a working group to develop a Carers Charter that could help carers and organisations understand what they could expect from each other. I jumped at the chance.
This collaborative process involving Kirklees council and also Greater Huddersfield CCG has gone from strength to strength. The main reason for this was that they welcomed challenge from me and other carers and recognised the need to evolve this project from a piece of paper to the toolkit it has now become. Kirklees is now well on the way to becoming a carer friendly community.
The Carers Charter has become, not just a document, but a social enterprise called Investors in Carers. For organisations to sign up to the Charter they must undergo a process of accreditation supported by Investors in Carers.
Organisations will state which part of the pledges they wish to deliver and actions on how they hope to do this. The accreditation is then awarded by a panel of carers supported by experts. The whole process has been created, developed and now delivered by carers. This is a new concept which demonstrates how as equal partners in the caring relationship we can transform care for the better.
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