Are all people living with a diagnosis of dementia treated equally?

There are thought to be around 650,000 people in the UK who are estimated to experience some degree of gender non-conformity (Gender Identity Research and Education Society).

It is widely recognised that there is limited evidence on the experiences of transgender people in Scotland and even less information regarding transgender people who have now developed Dementia.

For the first time, there is an ageing transgender population and as a result, many health and social care professionals are working with older transgender clients for the first time, many of whom have complex cognitive, social or bodily needs relating to their gender reassignment. We are only now seeing the first generation of transgender people in their 60s and over who have taken hormone therapy for 30 years or more, many of whom are living with gender reassignment surgeries performed using the very different techniques of the 1960s and 70s. Care is something that is often taken for granted. Illness and disability can occur without warning through accident or old age and the opportunity to arrange and to inform local caring services about their lifestyle or past as a male or female may not be possible. If the person in need of care is unable to wash, dress or manage basic care requirements then health and social care services will be involved, whether care at home services or care home services.

Many health and social care services are ill-equipped to deal with the needs of transgender seniors, and have had little exposure and so have little understanding of their history or the unique needs of transgender people, who fear that a move to assisted living or receiving care within their own home may leave them vulnerable to discrimination and harassment.

When we think about sexual orientation, gender identity and older people, we overwhelmingly assume that the older people who use our services are heterosexual and non-transgender. As a result, issues of sexual orientation and gender identity have often been invisible in the planning and commissioning of services for older people. The issue is further complicated through a societal culture which seldom seems to recognise or empower older people’s sexuality. This is particularly true in instances where the older person is perceived as vulnerable, specifically in a residential or nursing care setting where issues of capacity and consent may make the nurturing of an individual’s sexuality more complex. The progressive deterioration of the most recent memory for a transgender person could mean only remembering living in another gender, including not remembering having had gender affirmation procedures or surgery. A real concern of many transgender people is that they will be misgendered in the event that they become reliant on others for care.

One thing, though, is clear – for transgender people, ageing into the later years of life can present a unique set of challenges.

An example of this is older transgender people were reported to have become distressed within care settings because they couldn’t remember whether or not they have come out to fellow residents or staff and that this was causing significant anxietyto them.

There is limited understanding of how transgender people are affected by dementia. Whilst cultural awareness training for service providers is  required to improve the understanding of transgender clients and how appropriate and respectful care can be provided. Service providers also need resources and information to optimise culturally appropriate care for transgender people

There is a long way to go however, we must ensure that transgender people are protected against discrimination, harassment and victimisation on the grounds of gender reassignment.

To this end the Scottish government has begun engaging with transgender people to advise on trans-specific policies, thus enabling full participation in everyday, and public life by empowering transgender people, changing hearts and minds and creating a network of allies.

It is just a little over a week before we will be going to the polls to cast our vote in the General Election. It’s been an Election dominated by a range of issues in which, unusually, social care has featured quite prominently. I recognise that social care is a devolved matter and that it is the Scottish Elections which impact most significantly upon decision making for care and support. However, the political parties seem to have blurred this line by making commitments to spend and policy even on devolved matters. Mind you some political parties are so focused on the NHS and the health service that they are almost blind to the fundamental role of social care for our nation’s health and wellbeing. But it would appear there has at least been the start of a debate on the role of social care.

And my goodness I have found the whole debate about the care and support of some of the most vulnerable individuals in our society to be immensely depressing. The discussion has been framed, by the media and many politicians, within a discourse of pessimism and crisis. Language about the old has been discriminatory and stereotypical. Old age has been portrayed as a ‘problem’ to be solved; the solutions offered usually calculated as financial responses. The concern has been less about the quality of care for the minority than a desire to reduce the cost of that care upon the majority.

Coupled with this there has been a singular lack of positive vision about what social care and care and support of our older citizens needs to look like. Those of us working in the ‘system’ know that we cannot carry on the way we are. We recognise the need for radical change and reform but alongside that, if we are serious, we also acknowledge the glaring gaps in adequate resourcing and financing for our sector.

It has saddened me that the debate on social care across the United Kingdom has been undertaken with so little grasp of the real issues and a singular absence of dynamic thought-through vision. But then again when care becomes a political football, considered solutions to complex challenges are often sacrificed to political sound bites.

So as I go to the polls next week I am looking for a candidate or a party who amongst others things will:

Celebrate the reality of more of us growing older.
Old age needs to be seen as something to be proud of. We need to identify and declare the contribution, capacity and creativity of age rather than its drain, diminishment and dependency.

Not play the old and young off against each other.
The old are not the enemy of the young. We should not have to make choices between valuing the voices of the young, their education and development against the right of the old to be heard, to influence and to be supported.

Celebrate that the work of care is a fundamentally critical work and should be rewarded accordingly.
Caring as a career needs to be promoted and given priority. Working with and for people should be recognised as intrinsic to basic humanity. We should not be paying the basic, even a living, wage to those who dedicate their abilities to enabling the health and purpose of others. We should call out the perversity of a society that rewards those who pursue wealth for the self more than those who nurture wellbeing in others.

Do something to reassure the thousands of citizens of Europe caring today for our old and young.
As a society we are enriched by the work of thousands of carers from Europe who have become the friends and advocates of those being cared for in our communities. They deserve the dignity of knowing they are welcome and having their presence enshrined in immediate commitment rather than used as a bargaining chip at the tables of Brexit negotiations.

Work with older individuals, their carers and those who provide support to re-shape care fit for the 21st century.
A vision of care at home which allows people to have time to be, which helps to diminish the emptiness of loneliness by presence, and enables staff to identify preventable illness is a vision of a care system where we are focused on what’s best for individuals, not what is best for the ‘system’.
A vision of nursing and residential care where people are enabled to live their later lives with dignity, where individual needs are addressed and palliative support is adequately resourced should be the mark of what it means to describe ourselves as a real community. We should not have to struggle to justify the resourcing of this.

Work with providers of care to build trustful, dignified right-based care.
The current system is devoid of trust. Commissioners use systems to monitor providers and their workforce which serve to strip out dignity and respect. We have to move towards a mutual, co-responsible, trust-full delivery of care where the rights of the person cared for are upheld by a workforce itself treated with dignity and value.

Start to make hard decisions that might involve vanity projects being sacrificed and social care being prioritised.
We have to challenge the casual assumption that there is enough resource in the health and social care system – there is not enough to deal with demands today, never mind increased need tomorrow. That involves politicians and wider society making challenging decisions and choices, realigning priorities and objectives. Social care matters, contributes to and deserves to be valued just as much as finance, engineering, higher education or defence.

So just seven aspirations for the final week of campaigning. Will I find a candidate or party who on June 8th will help me be closer to achieving a human rights enshrined, adequately resourced, societally respected, older people led, delivery of care in Scotland?

It’s for you and all voters to decide.

Dr Donald Macaskill

@DrDMacaskill

My name is Nanette Paterson and I am the recently appointed Local Integration Lead for South Lanarkshire Health and Social Care Partnership. I previously held this post in East Renfrewshire and Glasgow (2.5 days in each area).

As the crow flies it is but a hop, skip and a jump from Glasgow to South Lanarkshire and in fact there is an area whose community align themselves with Glasgow when in actuality they are part of South Lanarkshire, which can make things very interesting.

Having now held this post in three different geographical areas, I feel that I am in a strong position to share the related strengths and challenges associated with such a large geographical area, which encompasses large rural areas as well as urban conurbations.

In the landscape of Health and Social care it had become increasingly clear that change was necessary for NHS Scotland to effectively respond to future care needs for people living with long term conditions. There was recognition that pro active approaches such as anticipatory care planning were required and this should incorporate joint working with service users and providers in all care settings to address the above implications, whilst being mutually beneficial to all.

Anticipatory care planning is about empowering, enabling and enhancing care and leading the way to better healthcare. Anticipatory Care planning demonstrates shared decision making through collaborative process to support a self management approach to personal health. Encouraging individuals with long term health needs to be cognisant of potential changes in their own health and wellbeing and to prioritise what is important to them. This process also allows effective communication of personal choice, practical need and sharing of key information with all those who deliver care.

In South Lanarkshire it was very refreshing to see that they have appointed an ACP Project Manager who has been in post since October 2016. She is currently raising awareness to the general public, wider community and carers, as well as updating health professionals throughout Lanarkshire in both acute and community settings. She has also been working with the emergency services to raise the importance of the Anticipatory Care Plan. Awareness sessions have been held across Lanarkshire in Leisure centres etc. giving active people the opportunity to find out more about the anticipatory care plan, and the importance of Power of Attorney is also being highlighted at this time.

All care homes have been given training and guidance on the use of these plans and it is now evident that, if residents do not have an anticipatory care plan in place when they arrive in a care home then these are being routinely completed after admission to care homes.

Local information has indicated that there have been incidents where care home residents have been admitted to hospital at the end of their lives despite anticipatory care wishes to the contrary.  Our cross-party working group continues to work to resolve these issues.

The timeous launch of the new National Anticipatory Care Plan on 7^th June should be a positive vehicle for  improvement and standardisation.

This is National Vegetarian Week. Although I am not a vegetarian, I spend a lot of my life eating vegetarian food and can understand why so many millions are now becoming vegetarians. Therefore it comes as no surprise that there is now a full week for people to explore and understand what it means to be vegetarian. It’s made me reflect on the role of food in good care – dare I say it’s given me food for thought!

For those working in social care we recognise and acknowledge that nutrition and healthy eating are essential ingredients for good effective care and support. We know that physical nutrition is often the first thing to diminish as we get older. Sadly we have evidence that 1 in 10 older people in the United Kingdom are suffering from or are at risk of malnutrition.

Positively there are an increasing number of resources available to ensure whether in residential care or in someone’s own home individuals are supported to be enriched by what they eat and consume. Resources such as those provided on the Care Inspectorate Hub support staff and organisations to get better at nutritional support.

But of course the benefits of eating are not just to do with our physiology, they impact upon our psychological health and well-being also. Hospitality is a critical element in effective care and support.

Last week the Guardian newspaper published research from Age Concern highlighting the millions of older citizens who are affected by loneliness and the mental health challenges that that brings. It’s not by accident that the word ‘companion’ which describes an essential element of being with someone, comes from a word which literally means ‘to break bread’

We all know that eating and drinking with others isn’t just a physical need but addresses a deeply felt desire to be with, to socialise, to communicate and commune. Sadly for many older Scots that social dimension has been lost to them and removed from them.

In our latest report published last Friday ‘Bringing Home Care’, Scottish Care is calling for a return to the social dimension of care. Time flexible, relationship based care, care with a social dimension – offers us not just physical fulfilment but also attends to psychological and emotional well-being.

We have got to the stage that convenience foods placed in front of someone on a TV tray who are then required to eat alone has become equated with adequate care. That cannot be right.

A cup of tea (with or without the biscuit!) and the time spent talking and gossiping, reconnecting and renewing, is as much a critical part of good care as the filling in of an assessment form or care plan to detail nutritional intake.

So whether vegetarian or carnivore – let’s put food and time at the heart of our care, let’s rediscover the social in social care

Donald Macaskill

@DrDMacaskill

Its just a few days to go before folks across Scotland will be going to their local polling stations to cast their votes in the Scottish Local Government Elections. In some senses since the General Election has been called less and less profile has been given to the Local Elections. This is hugely unfortunate because, and not to diminish the import of the General Election, so much of what affects our day to day living is planned, decided and delivered at local authority level. This is especially the case for social care.

Over the last few weeks as part of our Agenda for Care Scottish Care has been trying to raise the profile of social care and in particular some of the challenges we are currently facing as we seek as providers, workers and families to support our growing older aged population in Scotland.

So in these last few days and hours before the polling stations open I would like to invite you to take five minutes and think about what your candidates are saying about social care.

Take Five minutes to think about the fact that in Scotland we are faced with a 28% vacancy level in nursing in our care homes. There is a real crisis in the numbers of nurses available and willing to work in the care sector in Scotland. This is in part because local authorities do not sufficiently fund providers to enable them to offer the same terms and conditions that nurses in hospitals or in our communities receive. So is the candidate you vote for going to do something to attract nurses into social care because if elected they can make that change? Is your candidate prepared to challenge the myths and stereotypes which exist around care homes as places of care?

Take Five minutes to think about the fact that for many of the 100,000 people working in delivering social care across Scotland that their work is timed to the minute by electronic monitoring systems. Do you think it is possible to deliver dignified care in a 15 or a 30-minute visit where we have workers having to clock in and out and organisations paid for by the minute? I don’t think this is a system which gives respect and treats people with trustful dignity. Scottish Care believes  that we need to treat both workers and people who are cared for with dignity, trust and humanity. So is the candidate you are going to vote for someone who will try to make sure the way we buy care in our community is fair to both the workers and the person being supported?

Take Five minutes to think about the fact that local authorities pay only £3.97 an hour to support some of our most vulnerable older people in our care homes with 24/7 nursing care. Do you think that that is sufficient to offer dignified care to people who are often at the end of their life and who are living with conditions such as dementia? Is the candidate you are voting for even aware about the realities of the pressures care homes, whether private or charitable, are currently facing?

Take Five minutes to think about what sort of care and support you might want for a family member or for yourself in years to come. The way we care for our older citizens, is I believe, a sign of the sort of nation we are or want to be. Do you think that we spend enough on social care of the old? Ultimately these are decisions we all have to make because we have a limited amount of resources. Scottish Care would like us as a nation regardless of political allegiance to sit down and start planning seriously for how we are going to pay for social care in the future. We need a National Conversation about Social Care. Our current challenges will be dwarfed in the future unless we start taking hard decisions. So ask your local candidate how seriously are they taking social care? Is it just an added extra to their political concerns or is it at the centre of their priorities?

Take Five minutes to think about older people in Scotland. It is often said that older Scots have created our nation and that is undoubtedly true. But what is often forgotten is that our older citizens are still contributing, still shaping and still making our nation. As a society we often display significant discrimination against our older citizens. Local Government can do a lot more to include the voice and experience of people who still have a huge amount to offer. What is your local candidate saying or willing to do to include the voice of older Scots?

I could ask you to take a lot more than the five issues I have raised but whatever is important to you at this time, I would ask you as you stand in the polling booth to Take Five for Care because they are likely to be five minutes or five thoughts that will make a life of a difference to so many thousands who care for a family member, who work in caring or who receive care.

Donald Macaskill

@DrDMacaskill