Thursday 11 June 2015

Who takes care of the carer?

A few years ago, my Dad was suffering with heartburn and was having difficulties with swallowing. He was diagnosed with oesophageal cancer. Due to his age (69) he was not able to have an operation to remove the tumour and therefore started aggressive chemotherapy.

My mum, already retired, became a full-time carer. Both of their worlds completely changed. Mum was fit and healthy and very independent, attending her gym and tai chi and visiting me and my brother who now live far away. As time went on, she lost everything due to Dad’s illness.

After a few months, Dad stopped being able to eat entirely and was fed through a tube. He suffered terribly with the chemotherapy and, despite three rounds, it did not shrink the tumour. Dad lived another 18 months, deteriorating during this time.

My Mum received excellent support from local health services and Dad’s Macmillan nurse. Dad tried attending the local hospice for a few afternoons but didn’t like it so Mum had no respite from him. He was both physically and psychologically demanding, as you can imagine. Marie Curie nurses were also an outstanding support to us in his last few weeks, as they took over the night shift. Because of their support, Dad was able to die at home.

Mum and Dad were typical Care & Repair clients. They had both worked all their lives and owned their own home. Dad was a mechanic and was able to maintain their large three bedroomed house until their crisis occurred. They had never received any statutory services or benefits and were therefore unaware of how to access support.

Due to where they lived in England, they did not have access to Care & Repair services like the Care & Repair services we manage here in Wales. Upon leaving hospital after falling and breaking his leg, Dad would have been eligible for our Rapid Response Adaptations Programme for adaptations to help him and Mum move him safely around the home. Care & Repair would have helped to move the bed downstairs when necessary and would have supported Mum to access Attendance Allowance to fund the extra costs of caring for Dad. They could also have provided advice about the other services which Mum could access to support her needs as a carer. All of these things, of course, were implemented for Mum and Dad, but nowhere near as quickly and as smoothly as they would have been if they had one Agency like Care & Repair to manage this practical support.

Three years on; Mum lives alone. Her health suffered during the first few years but now she is back to her independent self. She not only lost Dad but lost all of her networks due to caring for Dad, so she has had to work hard at developing her own life again. What does she find most difficult? The answer is managing a three bedroom house and a garden, alone, without a Care & Repair handyperson to trust to do small jobs around the house and without a Care & Repair service to support her through larger works.

I wrote this blog to highlight the amazing work of carers and the agencies which supported Mum to care for Dad and allow him to die at home. I also wrote it to highlight the work of Care & Repair in Wales and why it is imperative that our services are protected in order to support the ever increasing numbers of older people in Wales to live their independent lives.


Rachel Gingell
Policy Officer, Care & Repair Cymru 

Monday 1 June 2015

Care & Repair doctoral research project

The Care & Repair Swansea University Doctoral Research project is now live! Given many of the headline messages from social policy and Welsh Government strategy relating to housing, health, social services and primary care, around a community-based social model of healthcare and public service integration, this is an exciting opportunity. Detailed work around our main activity as a frontline, home-visiting casework service will undoubtedly trace a bigger community footprint, which should be useful for policy development at a crucial stage in the debate around future-proofing public services.

Care & Repair agencies provide a unique and standard approach to the housing, environmental and living circumstances of older people. It is a blended approach, combining social care and technical housing fabric to provide a person-centred and problem-led approach. The older person receives an individually tailored, bespoke service. This has always appeared to work well. However, in a world of integrated approaches, shrinking public investment and competitive approaches, does it still work? ‘Bespoke’ is an old-fashioned and possibly hackneyed term, so are we becoming an old-fashioned service? In a fast-moving world, where the old artisan and craft skills are disappearing, will our approach end up as ‘time consuming’ and ‘over promising and under delivering’? Living under the big community tent and marshalled by statutory partners, are we a pivotal hub and close to the tent pole, or are we a cheap resource, disappearing at the edge of the camp like a flapping guy-rope?

My take on our ‘big offer’ is that we are the most modern of public sector organisations, anticipating important strategic trends and in the vanguard of change. We are defined by our partnerships and our collaborative efforts - in the best sense, ‘co-production’ in action. Seeking to build service capacity, we were a ‘social enterprise’ brand before the social entrepreneurs moved in. If you are looking to define prevention, we are responding to the real challenges older people face before they escalate into crises. If we deconstruct the pseudo-sociological concepts of ‘social model’-speak, we are a plain-talking, honest and accessible community delivery model. For the 12,000 older people we visit in their homes each year, we are a future-proofing service, keeping them ‘ahead of the curve’ rather than ‘stuck in the past’. I would say that, wouldn’t I? What do you think? This is an opportunity to say what you want as research student Joanna Wolton begins her investigations.


Neil Williams
Head of Agency
 Performance and Funding, Care & Repair Cymru


At this early stage, please leave a comment on the blog if you'd like any further information.