Amita Shah, a carer's specialist nurse
"It is my work with carers and colleagues who work with carers which keeps me “grounded” and full of hope for the future of the carers’ agenda..."
The invitation to do a write up for Afiya came about completely accidentally. I was at a Carers UK organised event on personalisation and heard a BAME [Black, Asian and Minority Ethnic] carer speak about her experience as a carer and her journey through the personalisation process. I was struck by her confidence and sheer resoluteness in wanting the best for the person she cares for. She mentioned Afiya as an organisation that had helped her through her transition from being an isolated carer to a confident, articulate woman who wanted to now be in a position to share and “give back” to the community of carers. For me this “self-lessness” is the most remarkable characteristic and gives me the impetus to remain focused on my work to improve carers’ health and well-being.
I work as a carer’s specialist nurse in Barnet. As far as I am aware this is a unique role. I am a qualified registered nurse with many years experience working as a District Nurse in the Community. In my current role in Barnet I work alongside the GP surgeries, the local authority and the local carer centre and other voluntary sector organisations. It is my professional awareness of the health service that provides a strong link between the agencies and allows for integrated working to enable the carers’ journey to be seamless. As my work is recognised I am getting more and more referrals from my medical colleagues.
I have an active case load and receive on average 15 new referrals in a month; a carer can remain on the caseload from six weeks to up to six months. The profile is mostly of carers who are looking after people with long term conditions such as Parkinson’s, Multiple Sclerosis, Motor Neurone Disease and Dementia. Former carers are signposted to local voluntary organisations and benefit from ongoing networking and often become volunteers themselves.
A typical morning would include two or three home visits to carry out holistic nursing assessments. In many instances this might be the first chance for the carer to discuss their concerns and anxieties with a professional. For this reason a home visit can take up to two hours to do the first assessment. Following the assessment a care plan would be agreed and the carer would be referred onto either GP or social services support or sign posted to voluntary organisations support services as appropriate. The fact that I am a clinician enables me to engage with local GPs in a way that non clinicians would find difficult. The carers find this opportunity to “talk” most beneficial as a form of emotional support. I have a basic knowledge of counselling; and would refer carers onto formal counselling services if appropriate.
The afternoons are set aside to facilitate carer support groups. There is a monthly group for carers for older adults, carers of people with mental health conditions, carers of people with physical disability as well as for carers of people with dementia and people with Parkinson’s disease.
As well as working directly with carers to identify and maintain their physical and emotional health issues, I am involved in training professionals in carer awareness and setting up specific training for carers. I attend strategic meetings to represent carers’ issues across health and social care.
Building trust with carers and gaining credibility amongst professional colleagues enables me to provide a much needed service which the carers find invaluable.
Some of the highlights of my career working with carers have been the opportunity to share this work at an International Carers Conference in Leeds which was held last year. I used this platform to raise carer awareness amongst some very influential delegates. In 2008 I was nominated by one of my carers for the Patients Choice Nurse of the Year Award and received a commendation for my work with carers. I have also received the Barnet PCT "Employee of the Year" Award.
It is my work with carers and colleagues who work with carers that keeps me “grounded” and full of hope for the future of the carers’ agenda. I am in the process of working with the local BAME networks to identify hidden carers in this group and have linked up with the local carer centre to map out local issues.
My vision for the future is to see more carer's nurse specialist roles embedded into the new integrated health and social care services.