Peter Coleing, Chair of Future East, received a response from Norman Lamb, MP Minister of State for Care and Support on the issue of representation for Older People on Healthwatch Boards. Read the letter
WHERE IS THE CARE of the Elderly / Vulnerable?
Our knowledge of abuse and neglect, indifference and inefficiency began in 2009 when my 90 year old mother fell and was admitted to hospital. The stay was distressing and upsetting with insensitive staff, seemingly no continuity of staffing and difficult to get information on what was going.
Discharged to an inappropriate care setting by Adult Social Care, with lack of, and incorrect information given to us as a family, my mother fell twice sustained a brain haemorrhage undiagnosed until we moved her to a home near to us, so I could be there every day. Here observing conditions that were unacceptable.
With attempts to try and shut me out of mother’s care by all concerned, I was treated as if I was of no consequence and not listened to when I voiced concerns. We moved her to a good reputation care home. During this stressful time the only way to protect mum was to try and develop a working relationship with staff. My mother deteriorated. I voiced concerns, asked questions, but began leaving every day with a very heavy heart and worried.
The GP said incorrectly this is what is to be expected from mum’s condition, fearing the worse we took her to the seaside for a few days – and discovered a pressure sore on her heel and skin on the verge of breaking down on her backside.
We educated ourselves on pressure care, my intuition proved right. We experienced apathy and hostility to complaints being raised and closing of ranks when we questioned the care and had to fight to get the care mum needed through Adult Social Care. Everyone was acting unconcerned.
Fighting for competent care and nursing care, obstacles were put in our way as we questioned poor care. Moving to nursing care, demanded the correct treatment for her wounds, questioning everything, present at every dressing change etc. It was a surreal environment where we, the family, were treated as an interference.
Two nursing homes later, and a rehabilitation/assessment ward of a local community hospital, it was a battle to be listened to in a system failing our elderly folks. Information kept from us, decisions made behind our backs, all against my mother’s express wishes. We were lied to and alienated.
The stress took a huge toll on us, our confidence in the care system shattered. We took mum home to our home after receiving the assistance of advocates, elderly care expert and solicitor and looked after her 24/7.
• She developed an appetite
• Put on weight
• Her skin took on a healthy sheen
• She started to think again, watch TV, play her word puzzles
• She was able to come off of unnecessary drugs
• Her continence improved
• Her pressure sores totally healed.
We lost mum two and half years ago and have been pursuing Central Essex Community Services, Adult Social Care and Mid Essex Health Trust and have admission of poor care and failures. We still have no admission from the care home.
Pursuing the authorities about the frightening gaps in the system, we devised an information system that may be adopted by Mid Essex Health Trust to address the gaps and empower families with knowledge.
Planning to try and harness the power of the public voice in Essex, and highlight what is happening in our area, we will launch our website soon, WhereIsTheCare.co.uk to take your live and lived experience stories – and provide information/signposting. Working with authorities to highlight areas that need change, putting pressure on them to do so, especially through Healthwatch Essex.
Our experience, our complaining, is going to lead to some positive change. Please complain. Please give us your story, experience, comment now direct to our webpage! You can email us on email@example.com.
Together we can make a difference.
I posed a question to the Deputy Prime Minster Nick Clegg MP last week, on LBC 97.3fm breakfast show, about the lack of real housing options for older people, what can be done to make better use of the housing stock to meet the needs of people experiencing new stages in their lives and wanting to change how and where they live?
There is a massive shortage of Extra Care housing which means a lack of choice for people with a family member that needs the extra care and their own home is no longer suitable. They seem to have no real choice to have the most suitable housing option for them; a care home is the only option available for many people even if it is not the best and this will cost more than Extra Care.
The answer I received was about the extra £10b investment by the coalition this year. Was there any new money? And what the government has done for first time buyers and the right to buy and the change in planning regulations. He was unable to answer the main point of the question: The need to build suitable new homes in real sustainable communities that enable movement and social mobility. We need to see all parts of tenure come together as one on this issue.
On 26th March 2013 I appeared on an afternoon music and talk show on BBC Radio Cambridgeshire. The subject was ‘ Who should look after the elderly – family or the State?’ Gloria Culyer from AgeUK Cambridgeshire also took part in the discussion.
The question stemmed from a caller who informed the show’s host that he had retired several years previously to look after his aged mother who was very ill and, at the time, had been given a short time to live.After several years he was till looking after her. He stated that he had no problem with that as she was his mother but he would be interested in the question of care being answered.
This is a very complicated question and an expert in the care of the elderly joined in the show from a studio in London. The original caller was also on line.
Comparisons with the past were brought up especially with the fact that, in many cases, the youngest daughter in a family did not get married and stayed with her parents to look after them in later life. Life was very different at that time, which is actually not so very long ago. There was less social mobility with families usually staying in the same area, village or even road. This meant that there was no need to worry about care of the elderly as members of the family were always present. Another factor was that, in most areas, there was more of a community sprit with neighbours and friends always being on hand.
These days there is a lot more mobility with families being split up by moving all over the surface of the world for work or for other reasons. Families also tend to be smaller and none of the children would welcome the fact that they would stay with their parents as carers. The movement of people throughout UK and elsewhere has also diminished the community spirit in many areas. In other cases the rise of commuter towns and areas has meant that, in those areas, many residents only use their residences to sleep and spend most of their time outside their homes. This has also added to the diminishing of the community.
From the discussions and questions it is apparent that there is no one answer which would fit all as every person, family and circumstances are different. This is a question which needs greater scrutiny at a local and national level to enable children to feel satisfied that they can do the best they can for their parents. It is also a discussion which should be held within families sooner rather than later.
FUTURE EAST STEERING GROUP
Healthwatch is the new consumer champion for health and social care for residents of its 152 local groups. Future East’s members Ruth Featherstone and Peter Coleing, were present at the launch of Healthwatch in London to learn what has been setup in our region. Jeremy Hunt Secretary of State for Health said the NHS must become patient driven and that all of the NHS must understand that complaints are like gold dust and should be welcomed as a real aid to improving services and not just a target.
Local Healthwatch organisations are the voice for patients and service users and importantly future patients and service users and Future East needs to work closely with them. We will need to ensure that while feeding evidence based information into the Healthwatch network that we also continue to be the distinctive voice of older people in our region on all aspects affecting the lives of older people and ageing.
We are hearing some local authorities suggest that Healthwatch is the residents’ voice on all matters of engagement with their residents. This can never be as there is a much wider range of services provided and commissioned by local authorities than health and social care where we continue to be the voice of older residents. There is much to do to embed ageing well and enhance the effective engagement of all service providers with older people and influence service development.
Future East is fully committed to working alongside Healthwatch locally and at Regional level to make the lives of all older people better.
Age UK has launched a definitive new report into the lives and health of people over 85, the fastest growing demographic group in the UK.
Entitled ‘Improving Later Life. Understanding the Oldest Old’, the report brings together international expert opinion to identify the trends, challenges and opportunities presented by the diverse old population.
People over the age of 85 are now the fastest growing demographic group in the UK. The Office for National Statistics (ONS) estimates there are currently 1.5 million people in the UK over the age of 85; by 2050 this will have grown to 5 million.
But in spite of the size of this social group, to date there has been a lack of comprehensive information about them.
Age UK’s report focusses on the lives and health of the so-called ‘fourth generation’, whose needs will change the parameters of public policy and family life.
The research provides evidence of a relationship between levels of physical and mental activity throughout a lifetime and incidence of frailty and poor health in later life.
Draft members meeting minutes with a number of useful website links including how to get a forecast/pension statement Members Meeting January, 2013 (not approved)