The carer’s voice – why it matters

In 2005, ten years after my mother was diagnosed with dementia, I started to write a blog.

At the time, I was self-employed, juggling jet lag, two small children, an irascible but loving husband, a cat, two rats, and the care of a matching pair of demented grandmothers. To take on another commitment was a little daunting. But it was a metaphorical spit in the eye of dementia; an attempt to ‘do’ dementia, rather than let dementia ‘do’ us. And I wanted to write a testament to Mum.

The first entry of ‘The Dandelion Clock’  read:

“The Dandelion’s puffball can tell you the time, but it is a fickle instrument. Time is dependent on how hard you puff and how quickly the seedlings fly away. The one thing that is constant, is that in the end, all the seedlings are gone. Dents de lion and pissenlit – it’s all the same in dementia.” It wasn’t particularly an original analogy, but it seemed to encapsulate the disintegration of a fine mind combined with a pollination of all the young minds that Mum had nurtured in her past.

Happily, that puffball defied two decades of dementia to remain joyfully and raggedly intact. Throughout, the guiding principle for me and my small band of carers was that Mum was living with dementia, not dying from it. A week before she died, I had persuaded Stagecoach to make a small detour to their publicised route, so that we could host a bus party for all, replete with mocktails, balloons and streamers. Our mantra “where there is no cure, there is always care” had a subtext of fun. Care meant living to the max and it looked something like this:

  • Good care requires carers first and foremost, to be experts in the person and secondly, the illness; this is the only route to person-centred care.
  • Good care is a two-way street, just like communication. Listening and receiving are as important as saying and doing. The goal is to enhance sense of self and self-esteem.
  • Good care means helping someone to stay connected to the place/people/things that matter.
  • Mental and physical wellbeing are inseparable. You cannot nurture one without the other.
  • Good care is like conducting an orchestra. You don’t need all the players all the time but you have to be able to read the score and know who does what.
  • Celebrate all that is achievable and do-able today: learn to work around the things that are lost.
  • Plan for ‘What if..?’ Carers are adept at crisis management but even chaos has a theory.
  • Accept that no-one will care as much as you do. About the person you care for or about you.

From the beginning I knew that, as a carer, I had to speak up and speak out. I agreed to become a founding member of Alzheimer Scotland’s Dementia Action Group in the hope that we might spark a discussion with Social Services to improve local support. I’ve spoken to medical students and nurses at the Universities of Stirling and Abertay, at DSDC and at the invitation of Alzheimer Scotland, Social Services and at carers conferences. I’ve spoken about our interpretation of best practice and about the impact of caring. And for the last four years, I’ve been privileged to represent all carers in my role as one of the carer reps sitting on the Executive Committee of the College.

Sitting in a low-ceilinged, sardine-tin of a room from two to five on a wintry afternoon takes dedication. Members travel from far afield to attend and rarely miss that quarterly meeting. Carers and service users contribute on equal terms with our medical colleagues. We feel like equal partners in care. We have true parity of esteem. I applaud and am humbled by the Committee’s recognition of carers and service users – it is rarer than they know.

 In the beginning, blogging gave me the freedom to speak my mind, about what was happening to me, to my family and the difficulties in piecing together support that encompassed the right balance of fun, compassion, respect and safeguarding. And blogging gave me a platform to write about the evolution of statutory care under the guise of “improvement” to service users and clients. In those days, the carers’ voice was not as sought-after as it is today.

That was then

If medication, and the review and tweaking of medication, is integral to some mental health care (less so in dementia), the careful construction of a social/community network with Social Service support is its important counterpart. And that remains as true today as it was over a decade ago.

I was not the only carer and writer to notice an imperceptible shift in social care provision around 2004. For us, it came in under the guise of ‘the flexible delivery of service to clients’. Our team of three carers mushroomed to twenty, thirty. Continuity and routine collapsed, Mum stopped eating and depression cast its long shadow.

The odd thing was that the more services were driven by financial imperative, the more fuzzy, buzzy phrases infiltrated service-speak. Thirty years down the Kitwood line and we had a slick lexicon to de-stigmatise and re-define mental health and those of us in its orbit.

Suddenly, carers were on “journeys”. Unwittingly, I had embarked (apparently) on a ‘career’ that might span years or perhaps decades. Meanwhile, the NHS and Social Services had clients, service-users and customers. And while I respect the wish of anyone who is living with a mental health issue not to be shoe-horned into the role of victim, we’re not talking Tesco’s or Apple Genius bars. ‘Patient’, from the Latin patior (to suffer), sometimes is the word. There is real suffering – and it’s not disrespectful to acknowledge that.

Re-vamping the branding doesn’t fool anyone, if the product on offer is pared to the bone. Eighteen months after Mum died, I wrote a letter to the First Minister. In it, I detailed my experiences as a carer and offered suggestions as to how things might be improved. I wrote about the nonsensical protocols that straightjacketed competent professionals into solutions that failed the very people whom they sought to serve. Solutions that were designed for bean-counters but which left even the most dedicated health practitioner demoralised and demotivated.

I asked about that much-publicised switch to care in the community. Surely that’s an objective to unite us all? Offering the prospect of cheaper care, no more silos, greater social acceptance. But as care needs amplify, I wondered how individuals were to access hospital beds, variable airflow mattresses, bath aids, stand aids, rise and recline chairs and wheelchairs? And if you are fortunate enough to fast-track those forms in duplicate and triplicate to get the equipment at a time when you needed it, how do you manoeuvre the hoist over carpets, get it through doorways and under the divan?

What about tax relief on care items no longer funded by the NHS or Social Services? On paid care so that you can continue to work in tandem with caring? What if carers with a proven track record of caring were allowed to claim against the estate to fund the costs of retraining and re-skilling in order to re-enter the workforce?

Eventually I got a reply, expressing condolences on the loss of my father.

This is now

Today, there are more mental health initiatives than ever before. Scotland boasts a Third Dementia Strategy, a Mental Health Strategy, a Carers’ Act, Frank’s Law, Self-Directed Support – but it amounts to diddly-squat without the commitment and the people to carry it through.

Legislative changes have put carers on the political agenda so why do so many carers report that their lives are harder than before?

Telling your life-story has become a little like old repeats on TV without the corny jokes or the punch-line. Ironically, carers in Scotland feel the contraction in services more than their counterparts in the rest of the UK. Self-Directed Support (2014) and the Carers Act (2018) might look good on paper but both are badly under-funded and poorly and unevenly implemented region to region. Local authorities and Social Services have faced swingeing cuts in staff and budgets.

The core issues remain the same as those that we were writing about in 2005 but life seems even harder for today’s carers. Only a small percentage are able to access support that is appropriate to them and the person whom they care for. Only 10%+/- of carers receive Carers’ Allowance and the Carers’ Annual Supplement. The quality of paid care is widely reported to be below par, while respite, even when available, is rarely tailored to age or condition. Inappropriate care and care settings are particularly pertinent in mental health care across the ages.

The State of Caring Report (2018: Carers UK) showed that conditions for carers have deteriorated even since 2016-2017. Caring brings financial hardship; it impacts on job, status, retirement, self-esteem and life opportunities; and it brings social isolation and dislocation. In the UK, 72% of carers suffer mental ill health as a result of caring. In Scotland, mental ill health affects 75% of carers.

What have carers got to do with the College?

Self-management of mental ill health and self-care to uphold mental wellbeing is surely the optimum. There are peer support groups, community projects and online programmes that are excellent – and we are getting better. But the reality is that so often, whether it’s just once or for a lifetime, support is needed from a family member or a close friend. And that’s where carers come in.

Recently, I attended a Carers’ Forum for which the main topic was desirable outcomes from the Third Dementia Strategy within the broader remit of the Mental Health Strategy (Is that the Strategy in which carers barely get a mention? Yes, dear Reader, the very same). Yet again, carers’ wishes were for befriending; the restoration of day care; better access to respite; the need for solutions and packages that were bespoke and person-centred. Every concern was noted but it became apparent that the focus of the Partnership was Telecare.

I’m not against Telecare. I quite fancy having my own care robot, a Dobby with interchangeable heads. I’d be hard pressed to choose Alan Garner or Joanna Lumley. But we are so far from that. And the idea that the most cost-effective human contact substitute is a disembodied voice channelled via a box on the wall because we cannot afford better, is depressing and dystopian.

My mother thought that the neighbours talked about her via her radiators. For weeks, she sidled along the walls so as not to wake the forces contained in those magnolia panels.

It’s people, it’s always been people, who can make a difference. And that means all of us – you, me, the psychiatrists, GPs, nurse practitioners, CPNs, pharmacists, psychotherapists, service users and carers – all of us playing the right notes in the right order- we’re the people who can make a difference.

Get a diagnosis and you have a chance of accessing financial and management support. Advances in medication combined with psychotherapeutic intervention augur well for successful self-management. And when self-management falters, carers with commitment and compassion and old–fashioned love are the backstop.

Some fifty years ago, Edward Lorenz theorised that the fluttering of a butterfly’s wings multiplied a thousand times would trigger changes in the atmosphere that could alter the course of a tornado. None of us can do it alone. Together we are so close to opening doors, to giving people a real chance to choose life, not just existence.

Those who have the privilege to help others transform their lives, often find that is actually their own lives that are most transformed in the process.

“There is no passion to be found in playing small – in settling for a life that is less than the one you are capable of living.” Nelson Mandela

Katharyn Barnett

Katharyn was originally invited to write this article by the Chairman of the Executive Committee of the Royal College of Psychiatrists in Scotland to mark the end of a four-year term serving on the Executive Committee as carer representative. The item appeared on the Royal College of Psychiatrists’ Scotland webpage as a guest contributor to the College’s blog. Having left the Carers Centre earlier this year, Katharyn is now engaged as a Dementia Link Worker in the Forth Valley team.