Thursday coming is Time to Talk Day which offers an opportunity for people, organisations and communities to take time out to discuss mental health and to support each other.

The event takes place annually and is organised by a range of mental health organisations and charities across the United Kingdom making it one of the biggest mental health conversations.

Despite all the progress we have made as a society there is still a very real sense of stigma for some around mental health and so a day like Time to Talk carries a huge significance. You can find out more about the day and access resources via the Time to Talk website.

We all know that being encouraged to be open about how you are feeling, to talk about your health and well-being as it relates to your thoughts, feelings and emotions is extremely important. Therefore, creating spaces and places where folks can do so, facilitating an atmosphere where people will be valued and heard when they open up and share, fostering an attentiveness and appreciation amongst family, friends and community is essential.

Yet there are some for whom there are additional challenges who I think we need to increase our collective efforts to support. I’m thinking today of one group of people in particular- older people.

If there remains a societal taboo or discomfort around mental health in general, I think that is accentuated for older people. It is certainly the case that older people talk less openly about their mental health and well-being. Indeed, when I reflect on people of my parents’ generation, brought up as they were in a Hebridean and island culture, the very idea of talking about -even demonstrating – emotions, feelings and mental health seems anathema. They were a generation in large part – and I think this is evidenced in years of research – who were denied the emotional vocabulary and skills to both understand their mental health and to be able to communicate around thoughts and feelings. In no small part my own generation are the inheritors of attitudes and behaviours to mental health which have been hugely damaging and crippling of our own mental well-being.

Someone in their eighties who uses social care services and who is immensely articulate and astute on many issues of politics and on policy affecting social care was in touch with me over the last month or so about the state of social care. As we chatted and conversed not least about their own financial struggles in dealing with soaring energy costs as someone living on a fixed pension income – he began to share more of his own story with me. It became clear to me that here was an individual who was struggling with depression, very low moods and at times suicidal thoughts. But he was starting to talk and open up for the first time in a long time. It has taken immense courage and will on his part to do something about it and to seek professional support – but it all started with him talking and with a conversation however tangential to the issues which were really hurting him. But shamefully one of the very real challenges for his listener was to be able to signpost him too or direct him to someone or a group who were able to help him. Had he been under 25 I would not have had the same challenge even if waiting times might have been obscene.

Perhaps because of the pressures of the time I missed an excellent short report which came out a couple of months ago in November 2022. It is entitled ‘Older adults’ mental health before and during the COVID-19 pandemic: Evidence paper.’ Whilst the title might not grab it is a very insightful description of older person mental health challenges – which also serves to illustrate the paucity of similar exploration in this field. I’m less concerned with the focus on Covid though that is not unimportant but what struck me most was some of the analysis and key findings. Its conclusions are very similar to a report written in 2017 long before Covid. In it countless frontline carers were interviewed and told both myself and other researchers about the hidden hurt of unaddressed mental health issues amongst those older people receiving social care in the community and in care homes. That report was called ‘Fragile Foundations: Exploring the mental health of the social care workforce and the people they support.’

Five years later in 2022 the latest report articulating as it does so many of the same messages highlights not only the shameful absence of research and studies on this population group but also the lack of any tangible progress or ability to learn lessons. It’s almost as if older age mental health matters less than the mental health struggles of others. As it states:

‘There is currently a lack of evidence relating to older adults’ mental health, particularly relating to LGBTI identities, ethnic and religious backgrounds, caring responsibilities and finances and deprivation. There is also little evidence specifically concerning non-statutory mental health services.’

There is a glaring gap in the mental health provision for older Scots and this is wholly unacceptable and damaging. We need to be much more proactive as a society in not only encouraging people regardless of age to talk openly about their mental health but to have avenues and supports to take those conversations should it be necessary.

For too long we have I think deluded ourselves – in part because of a lack of transparent evidence to the contrary in assuming that there are not significant mental health challenges amongst older people. As the latest report states:

‘Older adults appear to report better mental health outcomes than younger adults; however, this might reflect that they are less likely to report poor mental health, particularly due to more stigmatising views of mental health amongst older people and reliance on self-reported data. Findings also indicate that age-related stigma affects older adults in various ways, such as how they are treated in mental health services and how they engage with these services (e.g., not accessing services due to not wanting to be a burden).’

There is also a joint articulation in the report five years ago and the latest one when it warns us that we should avoid viewing older adults as a homogenous group and that there are very real differences in mental well-being between older adults of different ages (e.g., 65-69 and 75+) as well as in gender and whether they lived alone or not. It also underlined the critical importance of avoiding the pitfall of assuming that all older age mental health was about dementia or delirium:

‘A clear distinction should be made between dementia and mental health, particularly in older adulthood. Evidence indicates that an older adults’ mental health issues might be neglected if they are diagnosed with dementia. Mixed wards (i.e., patients with dementia, mental health issues or both) are viewed as detrimental for older adults with mental health issues. Without making a clear distinction between these, a clearer understanding of each is impeded.’

To put it mildly it is disappointing in the extreme that so little has changed in older person mental health provision in Scotland in this period of time including as the latest report states ‘including the varied approach to older adults transitioning from adult to older adult services and the low availability and quality of services.’

Talking as an older person or indeed at any age finding the courage to talk about mental health is not easy the least society and our political leadership can do is to listen with sufficient depth so that we create supports and services that can respond to mental health issues regardless of age.

The young Punjab born Canadian poet Rupi Kaur puts the balance of commitment well in an unnamed poem. From her book The Sun and Her Flowers:

when the world comes crashing at your feet

it’s okay to let others

help pick up the pieces

if we’re present to take part in your happiness

when your circumstances are great

we are more than capable

of sharing your pain

Donald Macaskill

There are many reasons for the current pressures being faced by our NHS and I have rehearsed those at some length in the weeks and months that have passed. This week I want to acknowledge the truth that if we were as a whole society to focus more sharply upon dementia and our response to that most pernicious condition then we would go a long way to addressing some of our NHS and social care crisis. I’ve had three dementia ‘prompts’ this past week which highlight for me the criticality of dementia.

I am focussing on dementia today in part because it is the Race Against Dementia Day. Race Against Dementia is a charity founded by Sir Jackie Stewart in 2016 to raise awareness and funds to enhance research and the development of a cure or treatment for dementia. It was created by Sir Jackie after his wife Lady Helen developed frontotemporal dementia and utilises the spirit and strategic thinking of Formula One to focus on this goal. The charity aims on Race Against Dementia Day to raise £127,000 and reminds us that 1 in 3 people born today will die of dementia unless we find a cure or treatment. It points out that that is the equivalent of 127,000 babies born in the UK every day and the goal is to raise £1 for each of these babies.

I was reminded of this urgent need to raise funds to promote research and the search for a cure earlier this week when I watched Kate Lee CEO from Alzheimer Society on BBC Breakfast television. In her interview she argued that dementia research which is the UKs number one killer is being neglected. On the back of a letter signed by 36,000 people Ms Lee called on the UK Government to honour its election commitments. She called for “a massive reform of social care, a visionary 10-year plan for dementia, and the National Dementia Mission funding to unlock treatments for people now and in the future”. Now whilst things are different in Scotland the challenge of under-funded research, patchy access and post-diagnostic support, and a lack of consistent and coherent vision around dementia is still the case.

My third dementia prompt this week was the chance with colleagues to meet Sophie Fraser from Alzheimer Scotland’s Brain Scotland work and to hear about the amazing work they are undertaking to increase awareness of dementia amongst children and young people and to explore ways in which inter-generational work between the care sector and children and young people can advance this work. More to come on that but you should catch their amazing video which communicates the preventative message so well at – https://www.youtube.com/watch?v=FjDAggnowz8

All of the above dementia prompts link directly into what I have been spending so much time working on in the last few weeks. I know for a fact that a disproportionate number of those who are ending up in our accident and emergency departments are older people many of whom are living with dementia. If we were able to have an adequately resourced social care system which was able to be less reactive and more formative and preventative in its delivery, then many of those individuals would not require hospitalisation or would not require it as frequently. But the truth is that despite the Herculean efforts of professional frontline social care colleagues we are only playing lip service to the priority which dementia should be for our society. We could do so much more with a dementia strategy in action which enabled every frontline social carer to be trained and equipped to the highest possible level of confidence and skill in supporting someone with dementia. The social care sector both in care home and community is crying out for resource to enable frontline staff to build on the existing innovative tools and techniques which help someone remain independent, which slow the progression of the disease, and which maximise the potential and creativity of an individual.

Alongside this I’ve been having conversations this past week which have highlighted for me just how perilous our existing social care dementia response is – never mind what we might want or should be doing to enhance existing practice. The vast majority of people who are living today with dementia are supported primarily by family carers and friends. Unpaid carers in Scotland are on the margins of notice and public importance yet their criticality cannot be over-emphasised. But they are, many of them, on their knees with exhaustion, a lack of support and resource, and lack of opportunity to have respite and take a break. Tens of thousands of people have taken the really hard decision to end their employment in order to look after a loved one and the lack of focussed support for them in that decision, especially when the supported person has dementia, is truly shameful. Our failure to care and support unpaid carers has an immediate impact on our stretched NHS and social care. Attending to system and service delivery without an equal focus on unpaid carers is folly.

At the same time many of us are deeply concerned about the potential savage cuts which are facing community based, third-sector and charitable organisations in our local communities. Faced with really difficult decisions local authorities are withdrawing funding from many projects which keep older people independent. The experience of Food Train in Glasgow which faces the real risk of closure as a result of the loss of funding is illustrative of what the umbrella body the Scottish Council for Voluntary Services warns is facing many charities across the country. It should be obvious that the loss of support organisations for older people in the community will in the medium-term result in more burden on an already creaking health and social care system. Decisions made today will result in people unnecessarily requiring care and support tomorrow and I fear that there will be a disproportionate affect upon our older age population.

Dementia cure is one that we are all seeking to work towards, to fundraise for and to struggle in a race to achieve. But alongside this we need to fight for a re-conception of priorities perhaps especially at times of fiscal restriction. A public health approach to dealing with dementia requires a focus not solely on prevention and cure though these are critical but upon the adequacy of treatment and support in our community. Dementia remains a major killer in our society but does it really receive the prioritised focus that it requires?

 

Over the last few days I’ve been speaking a lot to journalists and media in response to the initiative from Scottish Government to make funding available to enable the purchase of ‘interim beds’ in care homes. These are to allow for the speedier discharge of patients fit for discharge from a stay in hospital but unable to do so because of a lack of a social care package in their own home or because the care home of their choice has no space. In general terms I have welcomed this move because it stops people being deconditioned in hospital and continues their rehabilitation. My caution in almost every comment and statement has been that a bed is only of use if there are staff available to support and care for the person in that bed. And that’s the issue because in many places there are insufficient nursing and social care staff. One of the consistent remarks I’ve made is that our front-line staff now in a third ‘exceptional winter’ are knackered, exhausted and mentally drained. I know from conversations with national nursing, acute and emergency medicine colleagues that the sense of wearied exhaustion is one shared by so many parts of our health and care system. The problem is that unless you are in it – I don’t think there is a full conception of what that really means.

I’m saying that because I have the luxury of not being on the exhaustive frontline, I sit at the safety of a desk and distance from risk and harm. What I write here is not my experience but the words, thoughts and emotions shared with me through conversation and privately through social media.

I have never before encountered the volume of people, backroom staff and managers in care home and homecare, carers out in our community and nurses, catering and domestic staff in care homes who are as exhausted as they are now. Whilst others might have grabbed a summer of rest frontline social care delivery has been running on empty for season upon season – the reserve tank is well and truly drained. This is just the same for our often-forgotten legion of family and unpaid carers who are quite literally providing the glue to keep our communities going – they are tried beyond breathing.

One worker wrote to me this week having completed back-to-back shifts not because she was asked to but because she felt the need to be there for her residents. Indeed, she had only stopped going back in because her manager had refused to allow her to do so. She wrote to me:

‘ people really don’t understand what pressure we are under. When they hear the words a ‘tired workforce’ they think we just need a good night’s sleep – it is way beyond that! Folks are off with Covid and the flu and we are stretched to breaking. But it’s the tiredness everyone feels that is different. It isn’t just that you feel tired – it’s that sort of tired which means that when you finally do stop you still can’t get to sleep even though you want to. It’s more than just being tired – it’s a tiredness that gets into your bones and drains you. I’m reading Harry Potter to my boy at the minute and it’s just as if one of those Dementors has sucked the life energy out of me.”

I know this worker well and we’ve chatted through the dark days of Covid but in truth I’ve never felt her so drained as now in the messages she’s posted.

And I know she is by no means alone – we have a workforce in a critical state of health breakdown and distress. And as we continue to respond to a health and social care emergency that is what really concerns me. There are thousands at our frontline who are sacrificial, dedicated professional staff but who are living with a tired weariness that is unlike anything they have felt. A tiredness that is so all consuming that you cannot even feel the weight of your bones inside you.

Doubtless the majority will keep struggling and keep going, putting one foot in front of the other every day. But at what cost? The cost of burnout and mental exhaustion; of physical illness and disease. The cost of unintended error and insight missed. The cost of being so demoralised that years of study and skill are lost as they leave the sectors to go elsewhere.

And when these harms are often raised – when the mental health and wellbeing of thousands is mentioned – what is frequently offered in return are sessions on relaxation and mindfulness, a web link to practising self-care and using time; for those needing more some access to enhanced psychological and mental health support. I am not for a minute belittling these – for many they are essential – but as one colleague put it to me this week – they are often ‘tone deaf’’ They fail to appreciate the immediate and real harm that is being perpetrated every day to frontline carers and nurses and all in social care and health who are drained and exhausted. There is something truly perverse and morally irresponsible about a health and care system which is so intrinsically unhealthy and dangerous for those who work within it and physician heal thyself responses simply do not work.

I often wonder what it is we are modelling to our children and grandchildren through our health and care system? I am not thinking of the significant structural and system change we need to witness of which I spent time reflecting on last week. I am considering the extent to which in the reactive immediate delivery of health and care we have become so distant from manifesting the compassion, self-regard, self-care and mental wellbeing for our staff which should be illustrative of what a society needs to look like. This is not just about throwing more money at the problem, though appropriate regard and valuing together with more staff would help immensely, I am thinking increasingly that we need a thorough review of the way we treat our workers in social care and health – because we are not manifesting care and compassion. A workforce strategy must start from the position of how we protect, care for, nurture and regard our existing workers not how do we find more to recruit into an unhealthy system.

Monday is Blue Monday which will no doubt get much comment in the media. An original PR exercise to get people to travel more it is based on the questionable calculations of one professor who developed a formula to assess what is the most depressing day of the year. He combined a mixture of state of the weather, debt, time since Christmas, low motivational levels, failing to fulfil new year resolutions etc to come up with this date.

Whether a PR gimmick or a serious study it nevertheless has caught the attention of many as a description of the age-old truth that this is a dark and at time depressing period of the year. But it also risks perpetuating the myths of what cause distress and depression and creating an imaginary set of solutions.

For many of those working in frontline social care and health every day at the moment feels like a Blue Monday – and its not to do with the distance from Christmas or failed resolutions – but working within a set of worlds spinning out of control, with continual and constant and increasing demands being placed on people who are breaking and broken.

There is an acute urgency to attend to the healing of our workforce – and if when we do get through the next few weeks as we doubtless will – then there needs to be an equal urgency and emergency response to start the healing of the women and men who are tired beyond feeling. As a society we need to heal our carers.

Donald Macaskill