Archive for July, 2012

Susan Gets Her Life Back

Susan rang me one Monday morning and sounded upset. She had just returned from seeing her GP about the affect her 85-year-old mother, who is suffering from dementia, was having on her. She told me that her GP suggested she contact Relative Matters, the care consultancy I set up a few months ago, to see if we could help. Susan told me that she was exhausted. Her mother had rung her at least 20 times over the weekend for reassurance and the doctor had told her that it was time her mother moved into a care home.

Ann, Susan’s mother, had lived alone since her husband died just over a year ago, in the bungalow he had designed for them both. It has a large garden and being at the top of a hill, stunning views of the sea. In addition to not wanting to move into a care home per se, Ann’s bungalow was symbolic of her husband and their life together and reinforced her deep desire to remain living there for as long as possible. Susan was resigned about Ann needing to move into a care home eventually, but stated tearfully, “if you can only help her enjoy her garden for one more summer, I will know that I have done my best for Mum.”

Susan explained that she had arranged for agency carers to provide care and support to her mother daily and for Meals on Wheels to be delivered to ensure she had at least one decent meal every day. However, she told me her mother didn’t like the meals much, so at the weekend when she was not working, Susan often took a home cooked meal round to her. These arrangements had been in place for over a year, during which time she and her husband had not been able to have a break.

I arranged to meet Susan and her mother to understand their needs and the situation better.  I also met with them on another occasion to discuss Ann’s options and choices and make a plan. It was clear their overall aim was for Ann to remain living in her own home for as long as possible. So we got planning and here is what we came up with.

We changed Ann’s care provider to one that specialises in dementia. I reinforced her need for continuity with the new agency and negotiated a preferential rate that saved Ann £100 a week.

We included the following social activities: attending a Healthy Living Centre two days a week, shopping for food and retail therapy, visiting a garden centre for morning coffee/afternoon tea, re-joining the horticultural society Ann used to belong to, and support her to grow vegetables and cook them for her main meal. Ann used to love gardening and cooking and had not undertaken these activities for over a year.

We maintained mental and sensory stimulation by carers discussing news items from the newspaper Ann had once enjoyed and using reminiscence puzzles, a sensory DVD, putting photographs into a life journal.

We used technology to maintain Ann’s independence and to reassure Susan that her mother would be safe when she and her Carers were not around. Here is what we eventually decided on:

  • Provision of a 24-hour personal response service to go with her community care alarm, whereby a trained member of staff would respond personally to emergency calls. They would quickly assess the situation and ensure the appropriate assistance is provided. This gave Susan confidence that emergencies could be  dealt with quickly when she was at work.
  •  A service that would call Ann twice a day, seven days a week to check she was OK.
  • An iPod to download opera and relaxation music.
  • A bedside lamp that senses movement and will come on during the night if Ann gets up.
  •  A Property Exit Sensor to provide a warning by alerting the Care Centre if Ann left  the bungalow and didn’t return within a predetermined time.
  •  When batteries begin to get low in the equipment , a silent call will be made to the Care Centre and someone will come out to replace them for Ann.

The care plan was put in place over two months ago, since when Ann has only telephoned Susan twice and they both appear much happier. Ann’s medication for anxiety has been discontinued and she has begun to put on much needed weight. Susan and her husband enjoyed a long weekend in Paris and are planning a cruise later in the year. Me? I am thrilled to have been able to make the world a better place for older people, one at a time. Or in this case, two at a time.



Government Reform of Social Care Care. Part Two: Food for Thought

Having finished my rant about the Government’s lack of backbone to adequately fund social care, here are some of the important points that were raised in the Social Care White Paper and Draft Care and Support Bill.

From 2015 the government will introduce national standards on access to care services.  At the moment each council can set its own criteria, creating a so called postal lottery. National standards will help people to understand what they are entitled to.

New rules will be introduced to make it easier for older people to move around the country, to live for example, nearer to their relatives. Currently they have to undergo new assessments, which results in some losing out. This will give people the flexibility to make the most appropriate choices about where they and their families live.

The Government will offer state loans for care costs and residential fees can be taken from a person’s estate after death. Interest will be charged but the level of interest and whether this will be capped is not known. However this offers  nothing new and local authorities already offer deferred payment schemes without interest. 

People will be given access to personal budgets (money given to the person in lieu of services) by 2013 and have a legal right to them by 2015. The government will also invite expressions of interest to pilot direct payments in residential care in the summer of 2012. I was involved in Personal Budget pilots and feel strongly that until alternatives to direct payments are offered universally to older people who are unable to manage direct payments, nothing much will change. Council managed budgets will continue to deceive government statistics into thinking Local authorities have more older people with a personal budget than they actually have.

There will no longer be a requirement for carers to provide regular and substantial care, so any carer with needs could be assessed. The  Government also plans to extend the right to a carers assessment and provide an entitlement to services for the first time. A national minimum eligibility threshold for support for carers will be set  . However the amount of money needed to fund this new entitlement will be dependent on what money is available in the system and we will have another case of ‘robbing Peter to pay Paul’

Local authority can charge for services that they are not under a duty to provide. For example, people who are not eligible for the local authorities help. For these services, local authorities may also charge ‘arrangement’ costs. Up until now, it has only been the services that have been charged for, not the ‘management’ or ‘arrangement’ charge.

The government will be strengthening support within communities. They will introduce a duty on local authorities to commission and provide preventative services and fund or encourage a number of projects to encourage supportive networks of volunteers within communities, including Time Banking which is very good news.

The social care needs of people facing end of life are recognised with a commitment to abolish means testing for people on the end of life care register.  Most people would prefer to die at home but currently less than a quarter are able to do so. We simply cannot afford, in human or cost terms, to continue to allow people to die in hospital against their wishes.

Only time will tell if political will can be turned into reality. If I sound cynical it is because I have found over many years, that the devil is in the detail and the implementation of policies. As people come to terms with an ageing population and the reality of a care system stretched to breaking point, I have faith that ‘the people’ will decide. Let politicians from all parties heed my warning.


The Shame of Government to Adequately Fund Care Reform

After enjoying a career in Social Services and the NHS, I was naturally interested in the publication of the Government’s plans this week to reform social care. Furthermore, my passion for changing the way we care for senior citizens in England fuelled my frenzied activity between live web coverage, watching the TV and listening to the radio on the day it was published. With experience of helping my elderly parents manage their direct payments, more recently caring for my terminally ill father and my elderly clients and their relatives in mind, I found myself vacillating between excitement and outrage.

Firstly let me explain what all the fuss is about. The government has set out its proposals for the reform of social care in a White Paper. This has been published alongside a draft Care and Support Bill which will become the main plank of social care legislation, effectively replacing many statutes from the last 16 years. A progress report on funding reform was also published.

I plan to discuss these milestone documents in two parts. Firstly focusing on funding, then on the most relevant points for older people and their families in the second part.

I was thrilled to learn that the government made a commitment to the principle of capping costs, but sadly that’s where the good news ends because no radical decisions have been taken on funding at all. It has to wait for the next spending review in two years time when the government wants to look at cheaper options to the £35,000 level suggested by the economist, Andrew Dilnot last year.

For the sake of clarity, Andrew Dilnot CBE, was asked by the Government to chair an independent body, the Commission on Funding of Care and Support, with a remit for reviewing the funding system for care and support in England. It built on an extensive body of work already undertaken in this area and carried out new analysis before providing advice and recommendations on how to reform the system in July last year. The point I am making here is that over a year ago, independent experts, selected by the government, have already undertaken extensive work to recommend a way forward. So why is the government procrastinating now? 

According to Dilnot’s commission, the contribution any individual makes to their care, not including general living costs, should be capped at £35,000 and the level of assets at which people living in residential care should have to pay the full costs should rise to £100,000. This simply makes the cost to the individual a bit less daunting. It would mean nobody would have to spend more than 30% of their assets paying for their care.

According to Dilnot the figures that the government themselves published, show the cost would be significantly less than one x one-thousandth of total public spending over the three years covered by the comprehensive spending review.

Dilnot claims that the average person pays £10,000 tax a year. To implement the recommendations he made last year, which received wide support, would require a mere increase of 10 pence per person in taxation. Can we really not afford 10p to improve the situation for when we too, become old? Why is social care one of the few areas that we don’t fund through general taxation, like education and the NHS?

Lets not consider how quickly ministers can find money for other things if it seems electorally prudent. This is about the future shape of our society. It isn’t a transitory decision, a momentary crisis. It is a decision that will affect us all in one way or another. If politicians think that a better deal for older people is unaffordable then let’s have that debate. At least that means doing something rather than burying their heads in the sand.

In my opinion the White Paper isn’t worth the paper it’s printed on and MPs of all parties should rise in revolt. I for one will be behind them and would urge you to do the same.

Elderly Care Unwrapped

It is estimated that one in four people born today will live past their 100th birthday and in under 20 years, 25% will be over 65. Indeed there are already more people over 65 than there are under 18! The problem of our so called ‘elderly care crisis’ can no longer be ignored. Most of us will become old one day and the current care system, which is is complex, confusing and very unfair, has to change.

The situation is rightly receiving much attention from the media. I watched the second part of the BBC documentary, When I Grow Old,  with disappointment and a growing sense of despondency. The four care homes homes were all purpose built and only accessible to people on higher incomes. How many homes do you know have their own bar and take residents out for lunch individually in a mini bus? I felt the programme was more about class and wealth, ignored the lack of choices available to older people on low incomes and missed the opportunity to show alternatives to residential care.

I also watched a programme where the panel were discussing attitudes towards older people and  applauded the Asian woman who said we should be ashamed of the way we treat older people in the UK because where she comes from older people are honoured and respected.

However my high and low spots were respectively;  a social media entry which quoted an old man who had been in a care home for 10 years where he sat with his head bowed and didn’t speak. That is until a member of staff asked his family what music he liked and put together a tape of his favourite songs and music. From then on he became animated, began engaging with other people and started talking to them again.

Also and regrettably, a headline that hospitals are withholding food and drink from elderly patients so they die quicker to cut costs and save on expenses! Can this be true in the sixth richest country in the world we live in? 

In the BBC documentary, important changes were achieved in the lives of the older people taking part, without professionals or costing money. Indeed I  found with my own elderly parents that it is often the small things that don’t cost money which often make the biggest difference in an older person’s life.

What has to change is our attitude towards older people in order to create real improvement in the quality of life for older people. Yes we need more money in the elderly care system, but money alone is not enough. We need to treat older people with dignity and respect, help them become contributors and engage with their local community, so that younger people can help and learn from them. As I have banged on about before, we are all growing older and as a first step need to share responsibility for changing the current  ghastly label society uses for our senior citizens, namely ‘ ‘the elderly’ to  ‘elders in our community’ with the honour, respect and acknowlegement that role deserves. If we really want to change things, as the recently published on the White Paper for Health and Social Care proclaims we need to start by making old age something we value, rather than something we dread.


When I Grow Older

Did you see Part 1 of the TV documentary, When I Grow Older? It tells the account of four famous pensioners who leave their comfortable, wealthy life behind to begin a journey exploring old age. Each one shared their life with four pensioners to experience first hand what it is like to be an older person in 2012. The focus was on the anguish of bereavement, the pain of caring for someone, loneliness and isolation and dealing with the grind of poverty. Four important areas that I will cover in my next blog posts. Together it tells a story of the forgotten older people who live on the edge of our life, based on a snapshot into how older people live in the UK today.

My interest very rapidly grew to anger and I could feel my face redden and my heart begin to beat faster when I heard Tony Robinson, one of the famous four, say “All of us are complicit in giving older people shit lives” Here, here! I muttered while still fuming, How can 21st century Britain, which is supposed to be part of the developed world and one of the better off nations, allow our less well off senior citizens, to have so few choices and such a poor quality of life? The reality of the situation and my own mortality hit me like a sledgehammer. This cannot be right. We will all grow old one day and its time we did something about it.

The programme highlighted a picture of an insular, inward looking existence in old age, that is both frightening and unnecessary. Unnecessary because we should be putting responsibility for older people, especially the less well off among us, back into the community rather than depending on the state, aka Social Services and the NHS. Of course we still need the invaluable services they offer, but only temporarily when our health or life knocks us for six and we need their help. As our needs decrease, we need to return to our community as soon as possible and leave a place for the next person.

We urgently need to engage with communities to find solutions rather than maintain our dependency on the state. We have seen good examples of how communities can pull together and demonstrate kindness and generosity internationally. Think tsunami, the 9/11 terrorist attack on the US, Bob Geldof’s anti poverty efforts in Ethiopia to name a few. More recently and more locally, community spirit shone from austerity Britain for the Queen’s Diamond Jubilee and continues around the UK as the Olympic torch passes from town to town.

In the programme, important changes were achieved in the lives of the older people taking part, without professionals or costing money. What we need is the massive effort and rallying we see after disasters, to create real improvement in the quality of life for older people. We are facing an ageing population and must change our approach, fast. Yes we need more money in the elderly care system, but money alone is not enough.  We need to help our senior citizens engage with their community  so that younger people can help and learn from them. We are all growing older and need to share responsibility for changing the current  label society uses for our senior citizens, namely   ‘ the elderly’ to  ‘elders in our community’ as a first step. Leaving things as they are is not an option, if we want to make old age something we value rather than something we dread.

Family Support

I have just finished working with two brothers to support their elderly mother’s discharge from hospital into a nursing home. The situation became complex when she had a fall and fractured her hip, which was not detected for four days. There were other examples of bad practice while she was in hospital and it was great to work with her two sons to advocate on her behalf to challenge the NHS and find the right nursing home for her. Unfortunately it is not always the case that family members care for each other in this way, which got me thinking about families.

I concluded that ‘family’ could take many forms and mean different things to different people. Our family might be the family we were born into or the family we have created with our partner. We might include just our partner, or families that one or both of us brings from previous relationships. Family is what it means to us.

While our family may be based on different kinds of relationships, the one thing they usually have in common is that they provide a sense of belonging. They provide us with our identity and provide security and support. I guess family is where we should be able to go for safety and support although I am aware that unfortunately this is not always the case.

We live in a cosmopolitan country with a mix of different cultures and they all have their own family beliefs and values. Last year I was unexpectedly exposed to a different culture and experienced first hand how families from another country behave towards each other when one of them becomes ill.

While on holiday in Greece, I was taken ill and admitted to hospital for a couple of weeks. As well as being scary because I was on my own, it was an interesting experience and I watched fascinated while big (and very loud) extended families descended on their sick relatives. Family members took it in turns to carry out basic nursing tasks for their loved ones throughout the day and night, leaving nurses to focus exclusively on medical treatments.

I had plenty of time on my hands, so I would try and communicate with relatives in order to gain insight to their culture and the motivation behind what were often prolonged, intensive and noisy visits over several days. I watched with interest as older women waddled in with stooped backs and weary walks, probably the result of lifting and caring for their elderly relatives without a hoist or care workers to help them. I was told that staying with their loved one while they were in hospital, was a way to show their relative how much they loved them. Despite robbing their time, which was often needed elsewhere, relatives felt they would let their loved one down if they did not make sure someone was looking after them the whole time they were in hospital.

In the UK we have a unique purpose in our families and play different roles in caring for our relatives when they need help. We each handle the situation differently and there are as many ways of caring for and about our loved ones, as there are people.

For example, my brother visits Mum and takes her out regularly. He also used to take our parents on holiday when they were unable to manage on their own, which was jolly hard work. However undertaking practical tasks is certainly not his forte!

My younger sister lives sixty miles away and leads a busy life, working and looking after her family. She lacks confidence driving and relies on my brother-in-law to drive when they visit Mum. She is a great listener and provides a wise and receptive sounding board when I need to let off steam or gain a different perspective on things.

I am the eldest and have worked in the caring services for many years. As a result I was the organiser, consultant, negotiator, coordinator, mediator, financial assistant, employer and service coordinator for our parent’s care when Dad was alive and Mum lived at home.

What roles do you and other family members’ play when a relative needs support in your family?