A dream? Working together? Who? Why? Where? When? How?
One day I had a dream, a dream of 24-hour Best Care 365 days of every year for all vulnerable people struggling to cope with conditions which daily blight their lives, sometimes from birth, sometimes after some personally traumatic event, sometimes for reasons as yet undiscovered.
Coordination, Collaboration, Cooperation – and Continuity
I had a dream of all the coordination, collaboration and cooperation needed to make this ongoing 24-hour Best Care a reality; coordination of all caregiving efforts – professional and more informal care outwith treatment centres – by people working as a team to support the vulnerable and troubled person at the centre; collaboration to ensure continuity of care; cooperation between everyone involved in support efforts.
I had a dream where these collaborative teams working in their individual circumstances not only supported the troubled people – they supported each other, sharing relevant information on the condition involved, on successful strategies already recognised for dealing with whatever difficult situations might arise, whenever and wherever they occurred. They shared ideas to help the troubled individual towards changing and helping themselves; sharing resources and training.
Where and when?
I had a dream that where and whenever possible, the troubled individual is asked what they think helps/helped/might help in their own situation, what they find definitely unhelpful, who helps them at home and who they’d like further support from.
Everyone in any team, inc families, will not be able to offer the same level of support – but most are happy to offer whatever they can, especially when the importance of their care efforts and what they are doing is explained.
I had a dream that when a carer – family or professional – is exhausted with the ongoing longterm effort and stumbles, others in the cooperative coordinated team are aware and move to provide extra support while it’s particularly needed.
I had a dream that this is already happening in scattered places; a dream in which many people are already working towards making such coordination, collaboration and cooperation reality.
And in my dream those scattered teams in scattered places – whether in Australia, Canada, Germany, Nederlands, UK or USA – multiplied. They shared the success of their work in providing more effective efforts towards creating 24-hour 365 day Best Care and continuity on a daily basis for all the troubled people who need those efforts.
Rather than isolated fragments of support by caring individuals with little or no contact, through working together to create ongoing continuity of Best Care, who knows what could be achieved to support those at the centre of all our efforts?
This is true whatever the condition – perhaps a physical condition involving teamwork following an operation by an orthopaedic surgeon, with aftercare by nurses, family members, physiotherapist; or perhaps Aspergers syndrome where special educational needs are identified by teachers with extra support by family, friends; or alcohol problems, drugs, eating disorders or any other compulsive addictive condition…
The team involved may be teachers collaborating with parents…social workers collaborating with families…psychiatrists with siblings…psychologists with teachers and social workers and families…families with other families…doctors with other doctors and psychiatrists and social workers and families…
Indeed, rather than isolated and fragmented efforts, whatever combination of people in the individual support network team working together towards the best all-round continuity of Best Care possible.
Workingtogethercare… with benefits for everyone, most especially the people who need extra coordinated support and care, often longterm.
Being equipped with the necessary tools and materials is crucial to successfully and effectively tackling any problem …whether moving house, setting up home for the first time, preparing for a new job, going on a long journey, mending the roof, building a shed, whatever. The same is true when coping with a chronic illness in the family.
In any task, building a ‘toolkit of information and resources’ can make all the difference between the success – or not – of the project. For people in the caring professions – whether teacher, social worker, psychiatrist, community or hospital nurse, therapist, psychologist and many other allied professions – this probably means through training with experienced practitioners, plus learning on the job.
The task of providing much-needed support and care for a vulnerable and often troubled loved one in a home situation is no different – and finding appropriate tools to help is essential if home carers are to continue in that role.
A Good Start
Home and informal carers can make a good start to find what they need in their own situation by
- talking to family and friends, colleagues and acquaintances
- asking if these contacts happen to know of anything or anyone who might be helpful
- looking for any books that might be useful and interesting
- looking for websites giving relevant and accurate information
Talking where appropriate of their own problems and concerns often gives other people permission to share theirs. This has happened many many times since my daughter was so ill with anorexia nervosa, a devastating illness with major physical and mental health. When my experience is mentioned, or my writing, almost inevitably the response is of another person’s experience – perhaps not direct personal experience but they will know a friend, or a relative, a colleague, a neighbour… who has had similar experience.
This was how I found a small group of people who formed the beginnings of personal and mutual support for us all.
Talking about personal problems
Some folk are easy talking about their problems in relevant situations; others don’t feel at all comfortable talking to anyone about personal or family problems. In this case, perhaps ‘Someone I Know’ may be having the problems… ‘My old friend H is worried about his daughter, she’s….. I wonder if you know someone who could help? Or maybe a book or good website?’
Being equipped – whether through training, a helpful professional or a friend or organisation – with a list of where they can find reliable information, or the name of a recognised charity, will help any carer (home and professional) take first steps towards developing more effective support. For instance home and informal carers who support someone with an eating disorder, in UK finding and contacting b-eat will be a major step forward; b-eat has a recommended reading list as well as trained telephone and email volunteers who can offer help and support.
After acknowledging the problems and the impact of coping – or not – on a daily basis, taking that single step of seeking help whether through a friend, a professional, books, website, telephone helpline, email, can lead to big changes.
Activities and Toolkit
By searching, carers can find activities to support them in their efforts, e.g. ensuring through finding personal support to give them ‘time out’ to take a breather, to come up for air, through perhaps continuing a hobby or finding a new one, that the demands of their caring role don’t completely take over their whole existence.
Even more fortunate are carers who find the Toolkit of Information they need, and also find or are offered further resources to help them with the task of building the best ongoing care possible – practical workshops, locally or within travelling distance, about e.g. how to motivate their loved one to change behaviour which is having negative consequences in their own lives, and often of everyone around them.
Recognising that continuity of care for their patients, whether in hospital or home care, often leads to better outcomes, and based on years of experience and research of what is most effective in therapeutic settings, some professional teams – for instance, at the Maudsley Hospital, London UK – offer series of practical workshops to give carers recognition of how important their responses are in various situations, how these frequent informal interactions can help or hinder individual recovery.
Sharing and discussing common problems and best responses in a workshop situation also gives help with family members’ common feeling of isolation in extremely difficult and often exhausting circumstances. And practising the best possible responses to make them easier to remember when needed under pressure, is easier in a supportive environment.
As in every journey, making that first step to explore options and possibilities – finding that Toolkit of Info and Resources for individual circumstances whether through individual searching, a friend or perhaps a professional – is the most important.
BUT – a note of caution
New ideas are being developed all the time. Research is being carried out all over the world… some research may confirm an original idea.
Some ideas – even published research – previously accepted as true (e.g. the earth is flat; that standing the legs of a sickbed in bowls of water will prevent germs attacking a patient; that ‘faulty parenting’ are exclusively to blame for mental health problems) are proved eventually to be wrong.
New research sometimes shows flaws in earlier research methods – which gave skewed results. For instance, if depressed people already in medical care are asked to fill in a questionnaire about their childhood which gives them only restricted possible answers – e.g. My father was – a) violent towards me; b) always angry with me; c) ignored me; d) locked me in; e) belted me; f) swore at me; g) terrified me) – guess what the questionnaire results will be?
If no possible choice of any positive options are given, it’s more than likely that conclusions from such a skewed questionnaire will be inaccurate… How different would the results be if choices, as well as some negative ones, included e.g. My father worked hard to support me as well as he could; took me on outings regularly; was often good fun; was grumpy sometimes but most of the time was ok…?
Therefore it is very important to check and cross check with other sources that information found – whether in books both new and second hand, is accurate and reliable; that information found on the internet is true. Remember, anyone, anywhere (including me) can post anything on the internet!
Check regularly for new developments …and cross check with other reputable sources.
By finding what’s needed to build our individual Toolkit of Info and Resources , and sharing with others to help them do the same, whether professional or informal home carer, workingtogethercare could indeed become reality. In doing so that ongoing care so crucial for people who need extra support – whether in the short term during an illness or following an operation, or because of a long term chronic condition – can only be improved.