We are beginning to have a voice

To support Experience of Care Week 2018, the latest blog in NHS England’s healthy ageing series builds on the concepts discussed so far and brings a shift in perspective. There are almost 1.3 million people aged over 65 who care for a friend or loved one in the UK. Here, Ken, 79, who is the main carer for his wife and an active advocate for carers’ needs, shares his experiences:

My wife Elizabeth is now wheelchair bound so I have taken on the running of the house.

Fortunately, I am a reasonably organised person so this isn’t too onerous. I have always loved cooking and, being vegetarian, we are very adventurous with our recipes. I am a mean hand at baking and the Hanham carers’ group in South Gloucestershire always look forward to my home-made biscuits and cakes.

Although Elizabeth is physically disabled she has an active mind, so we share lots of interests and get out as much as possible. We very much enjoy classical music, reading and crossword puzzles.

Before my wife became so disabled we were very actively involved with Amnesty International Bristol and helped to set up the very successful ‘Books for Amnesty’ to raise funds for the charity. We are still extremely concerned about human rights and I take an active interest in politics. When the weather allows, I enjoy pottering in our garden.

We are lucky that we have a very proactive health surgery in Hanham. We have regular health checks and there is always a doctor free to deal with emergencies. Hanham Health has also established a system where carers are registered at the surgery and this is flagged up every time they seek the services of a doctor.

Twelve years ago, I was diagnosed with lymphoma but was successfully treated at Southmead Hospital in Bristol. More recently, my wife had surgery for bowel cancer at the same hospital and has regular follow-up checks. We cannot speak highly enough of the care and support we have received from the health services. However, I am aware that many other people are not so fortunate.

Elizabeth and I both belong to the local over-fifties forum and I am an active member of the local monthly Hanham Carers’ Group (South Gloucestershire). I have been a carer representative at multi-agency meetings across the region for almost 10 years and I get much satisfaction from this role.

As a carers’ representative I sit on several committees which enables me to give a voice to other carers and speak up for what they need. For instance, I attend South Gloucestershire Older People’s Partnership Group, which works together to improve services for older people.

I also sit on South Gloucestershire Carers Advisory Partnership and the Carers’ Strategy Implementation Group, which oversee the local carers’ strategy and make sure that the action plan is carried out. The strategy helps hold the local authority and clinical commissioning group (CCG) to account around this action plan.

I get a lot of support from the Carers Support Centre and also from other carers who are working towards the same goals: recognition of carers’ needs and advocating for resources to meet these needs. Carers’ representatives meet regularly to discuss issues and concerns raised by other carers, and to discuss feedback to the various groups we represent. I have made a number of close friends with other carers and we support each other.

During my years as a carer representative there has been a gradual growing of awareness of carers’ needs both in local and central government. We feel we are beginning to have a voice. For example, there are now carers’ reps in local surgeries to identify carers and to point them in the right direction in getting help and information.  My local CCG is funding several roles at Southmead Hospital to support carers with the discharge of those they care-for.  They have also managed to negotiate free parking for carers at the hospital.

However, there is still much more to do, especially regarding social care issues.

The joining of health and social care would benefit most carers; for example, there should be a named person in each surgery responsible for social prescribing for carers and people being cared for, with access to social care available from GP surgeries and other settings.

It is vital that carers have access to short breaks for respite.  There should be more respite options for carers with flexibility in the system.

More broadly, it is also important that local carers’ strategies are regularly updated and action plans are carried out.  We should be pushing for better services for carers and ensuring that their views are fed into local and national policy.  For example, the carers’ representatives group has recently pushed for carers to be involved and better supported when those they care for are discharged from hospital or moved to another facility.

To enable them to continue caring, carers need to be taken care of themselves.

Ken Strong

Ken is 79 and retired in 1996 after almost 30 years of working with young people.

With his wife, Elizabeth, Ken moved back to Bristol to care for his mother-in-law, who lived until she was 96. By this time Elizabeth had suffered many years of back pain as a result of an accident, and was registered as disabled. Her health has deteriorated over the years and Ken is now her main carer.

One comment

  1. David and Wendy Hillling says:

    Ken is our bother-in-law and we know of his wide range of caring activities over a very long period of time.
    He is well aware of the requirements of such work and his experience, understanding and knowledge make him an ideal person to pass this on to many others, often finding themselves as carers in emergency situations
    and needful of such help.

    David and Wendy Hilling