Carers’ Week Chaos and Concerns

Lynn reflects on yet another Carers’ Week in the context of a tumultuous General Election.

When I was asked to write this blog for Carers’ Week, I was conscious of the looming General Election. I did some fine-tuning post election on three hours sleep last Friday; still trying to make sense of it all (and not doing very well!).

Here we are then – Carers’ Week. It’s my second as an “official” full time carer – someone who provides 35 hours or more of care for the princely sum of £62.70 a week.

It’s not a landmark I want to celebrate, for a number of reasons.

I miss being in full time work; I miss earning a decent wage and I miss being valued by society. As a “scrounger”, I am deemed to be a leech sucking on taxpayers’ money. That’s what many in the political world would have you believe and yet, carers are essentially a significant, poorly paid public service, which underpins our communities and our economy.

Carers’ Week should be a spur to action – to improve carers’ experience and outcomes and to improve the way we treat disabled people. However, it seems only to elicit the usual platitudes about unsung heroes (my least favourite phrase). For many, Carers’ Week serves to remind us of how little progress has been made; in many ways, we are going backwards. The services and supports we need are not always there; the right services and conditions for our loved ones are eroding fast.

This past year has seen many of my friends and fellow activists fighting local authorities over destitution level care charges and further cuts to crucial care services. I’ve watched families brought to breaking point by a deeply flawed interpretation of legislation, which was meant to transform our broken social care system.

Continued cuts to respite and community support; further benefit reductions and cuts to pupil support all combine to leave families coping with more than most can imagine.  Dealing with constantly challenging behaviour; lack of sleep; learning to use medical equipment; physical lifting and turning; washing; wiping and changing beds are a daily part of our lives – yet public services meant to make life easier often fail to work with us. The facets of good public service, outlined in the work of the Health and Social Care Academy seem quite elusive. Rather than ceding control to families to achieve good outcomes, carers feel that they have no control over their destiny.  Carers’ Week often hides the less sanitary and salutary aspects of caring.

It has also coincided with the fallout from last week’s election – an election marked by chaos and change. Those concepts are not unfamiliar to carers and yet, there is no comfort here.

The result doesn’t help appease my worries for the future. It won’t do much to secure much-needed investment for social care or other services we rely on. It’s also unlikely to shift the debate on the value of unpaid care or the pitiful level of Carers’ Allowance.

Carers are a pretty cynical bunch – we will continue to be cynical as we wind our way through another Carers Week. And we’ll be watching what happens post election – with more than a passing interest!

@Carer49

Rediscovering Humanity – The Building Blocks of Good Public Service

Lynn Williams, unpaid carer, argues that humanity should be at the heart of every political decision driving public service reform

Caring for someone you love often plunges you into the heart of a public service maelstrom. The last few years in “Chez Williams” have brought numerous professionals into our lives – physiotherapists, OTs, a whole gaggle of different hospital consultants, specialist nurses and so many others. (I’ll leave our recent DWP/ATOS experience for another day!)

In reflecting on all that has happened to us, there has been one factor clearly evident in every good experience; professionals who have treated us both with tangible humanity.

The consultant who hunkered down on his knees to speak face to face to my husband – who saw the funny and deeply intelligent man behind the wheelchair; the specialist nurses who understand my husband’s needs and who have helped us to laugh during difficult periods which I can’t even begin to describe; the local rehab OT who took time to get to know us, to listen to my husband’s desires for his life and who worked with us and identified a service we didn’t know existed.

Humanity, compassion – and yes, the word of the moment, co-production. At the heart of those positive interactions, my husband has been treated with deep respect, with honesty and with the humanity that should form the foundation and building blocks of strong and effective public services.

This doesn’t mean that those working with us can always offer practical help or provide answers to our questions. Often, we just have to find our way through the next challenge. However, with someone at the end of the phone; with someone who has taken the time to understand our wee family, the challenges we face become more bearable.

If only that humanity was more evident in all aspects of public service; if only a desire to maximise quality of life sat squarely behind every commissioning exercise and at the heart of service and policy development.

The sad fact is that the lives of disabled people and their families are often reduced to numbers; to a unit cost in the equivalent of a factory production line. This culture is sadly too evident in the work and myriad of papers that drive the work of the still new Health and Social Care Partnerships.  “Commercialisation” of public services can effectively squeeze out humanity or compassion for our fellow citizens – the criminality of charging for help to get to the toilet, to get out into your community are perfect, if somewhat disturbing, examples of this.

Like others, we have sometimes become lost in a maze of jargon, bureaucracy and confusion, deftly described by the Christie Commission seven years ago. Families are sadly still left to fight the public services which are supposed to be helping them.

In that fight, people are left exhausted and de-humanised; that was not what was envisaged in the journey to transform health, care and other services. Unfortunately, compassion and good outcomes often happen in spite of policies like integration or self directed support.

My husband and I are incredibly grateful to the many professionals who have touched our lives. They have helped us deal with dramatic changes and some dark days. Our experience should not be the exception and therein lies the challenge.

How we “measure” the humanity of public services must be considered by the Burns review of health and care outcomes; humanity should be sought in every manager and director who wants to progress their career in public service.

Humanity should be at the heart of every political decision about the services which profoundly impact on people’s lives.

@Carer49

Debate about future of Social Care is Vital

Social work and social care are not valued enough and neither is there enough anger about the poor outcomes experienced by disabled people and unpaid carers says Lynn Williams, Unpaid Carer.

I was very privileged to have the opportunity to speak at the recent ALLIANCE event focussing on the recent Audit Scotland report “Social Work in Scotland”.  Read More “Debate about future of Social Care is Vital”

Podcast: Creative Competition 2016 – Maureen

Meet some of our Creative Competition entrants:

In the first of a series of Creative Competition themed podcasts, we meet Maureen as she shares her poem ‘Scotland’s Unpaid Carers – A (Scottie) Dogs Life?’, her entry to to the Creative Competition 2016, Voices of the Experts.

Maureen talks about her involvement with Renfrewshire Carers Centre, and the source of support it has been to her in her role as an unpaid carer for her husband. Re-discovering her creative talents through the centre’s arts and crafts group, Maureen crafts beautiful felt Scottie dogs, paints and has taken up writing poetry again. Utilising her creativity has been a helpful outlet and as Maureen describes ‘therapeutic’.

scottie-dog
Scottie Dogs made by Maureen at the Renfrewshire Carers Centre
maureen
Maureen with one of her paintings

Being a Young Carer: My Experience by Sophie Dishman

Having been a young carer for 10 years now, since the age of 11, I can say I have a considerable amount of experience. I care for five members of my family and I have my own life too, as well as dealing with my mental health problems, being a full time student and volunteering. But I wouldn’t change it for the world. Read More “Being a Young Carer: My Experience by Sophie Dishman”

Palliative Care: from acute to the community

The planning of Health and Social Care Integration needs to have a greater focus on palliative and end of life care. This event would aim to encourage Joint Boards and partners to think about how this care could improve under the new organisation.

Short inputs in a panel style discussion from:

  • Members of the Marie Curie Business Development Team who could discuss service development in an integrated setting;
  • Members of Marie Curie caring services team who can discuss the service on the ground;
  • Individuals from the Marie Curie Expert Voices Group (made up of former carers) who can discuss how good palliative care can make a real difference;
  • Discussion of the policy/strategy relating to palliative care and how that fits with integration.

The Strategy on Palliative End of Life Care will be published in December.

To register please email event@alliance-scotland.org.uk 

Young Carers Say “Talk to me, not at me.”

Everyone has life goals, but perhaps they are most pertinent as we move into adulthood, people want their independence, their own house, they want to go to college or university, to find a job, have a little money in their pocket and enjoy life. But for some Young Adult Carers these goals can seem unattainable. Read More “Young Carers Say “Talk to me, not at me.””

A dignified approach

What is the true value of caring and supporting others?  Of late I’ve realised more and more that our society tends to assign a monetary value to everything – including the role of carers of disabled people and people who live with long term conditions.

But that doesn’t need to be the case.

I was recently at an event organised by the Glasgow Centre for Population Health, on “the economics of dignity”.  The seminar was addressed by an academic Dr Marilyn Waring, a feminist academic who has spent the last 25 years working to empower woman and men to challenge the priorities that are imposed upon them by economists.

Read More “A dignified approach”