Rachel Peacock is CEO of the support provider Making Space. Here she describes the “current reality” for people supported, families, staff and managers and offers thoughts about the future. Hers is in part a story of struggle, fear and grief but also one of courage, caring, love and mutual support. She asks that social care staff be treated exactly the same as their wonderful NHS colleagues and some assurances about the future – particularly around the “easments” to the Care Act including around carers rights and of those with mental health needs.
This interview is with Wendy Lowder, Executive Director for Adult Social Care and Communities in Barnsley. Wendy speaks of the response of council and partners – a place with a history of devolution of decision making to localities. Wendy talks about aligning with others and seeing mutual aid as key partners in this. She also speaks about some specific issues concerning many including supporting direct payments users, financial assistance to support providers & advocates for national support for charities and community groups. from the middle of the crisis Wendy also has words about the future for social care and beyond
In this interview Sally shares some of her recent experiences, during the Covid-19 restrictions, that has led to action at street, local and national level.
Sally works alongside people with a learning disability and/or autism, their families and many of support providers. She has a real passion for breaking down the barriers that separate people from being active and valued members of their community.
Calls from a number of self-advocates in the first week of the Covid-19 restrictions led to Sally and colleagues creating resources to ensilage people to host ‘Gr8ChatandBrews’across the country.
Eve Holt is an elected member in Chorlton Cum Hardy. She tells her story of the last few weeks. Like other elected members she has a key role as both local activist and link to the local formal system – not always an easy task in normal times – greatly intensified in the present emergency. What is she noticing about how this dynamic is playing out and what does she see as critical to emerging into a better future with different relationships?
The world has tilted not just on a personal or even a national level but globally. Never before have we seen such restrictions on our movement and daily life but also on our traditional working practices. It is a time of uncertainty, anxiety and huge stress as we all try to reimagine how we maintain our health, both physical and mental, and continue to support those we care for personally and professionally.
I have worked for over 20 years to support those with the most complex healthcare needs and in that time I can safely say the model has not changed in the slightest. When considering a piece of equipment for an individual with disability the vast majority of time the following would happen:
Therapist identifies a need that could be met using specialist equipment – in our case simple night-time positioning.
Therapist negotiates with the person, their family or those providing their support and a specialist company advisor experienced and trained to provide assessment for that particular piece of kit.
This may take weeks – availability, school, medical appointments, part time working on the part of the therapist, family members that also want to be present… this negotiation is no mean feat…
On the day the advisor travels to the assessment, as does the therapist and the assessment takes around an hour. This takes into account getting the person ready, in our case we need to see them in bed, people using the bathroom, having a cup of tea, generally catching up. The actual assessment is a sizing exercise, no one can tell in that hour how the person will respond in the medium to long term so it really is a case of the advisor checking to see what might work and wherever possible supporting the person to experience using the kit. Everyone then travels back to work, home or on to the next assessment.
It is not uncommon for the therapist and advisor to arrive at the assessment to find that perhaps the family had forgotten about it, or that the person was admitted to hospital the night before – no one is at fault, in stressful situations people may forget to cancel. The negotiations then begin again to get everyone in the right place at the right time.
Once the right kit is identified a request for equipment is then forwarded on into a system which again may take weeks if not months (we have known orders for equipment come in 2 YEARS after the original assessment…) By the time the person has the equipment they need, their needs have often changed and so the therapist, person, family and those providing support begin the complex dance to arrange to meet again to make sure the kit is being used most effectively…
This method of working is wasteful, inefficient and results in a huge carbon footprint. At the end of the day, the person who ultimately is let down by this system is the person at the centre of it; the person with complex needs themselves.
So – is there an alternative? Is there a way to work with people to find a more effective, less expensive, more environmentally friendly way of working that supports every player in this game to play their part? The modes of working we having to adopt during the current ‘lockdown’ suggest that there is. By drawing upon the methods we have employed for many years to support people and their therapists overseas, using secure, simple telehealth platforms that allow us to focus on the essential elements of the assessment process, we are now reaching people we would have otherwise visited face to face.
Of course there are key issues to bear in mind when considering a potential telehealth solution:
Can we ensure everyone’s safety by offering 3-way telehealth from the comfort of everyone’s homes or places of work?
What is the risk in delay – the individuals we are supporting are some of the most vulnerable and WILL see deterioration in their already fragile health if needs such as posture are ignored for 12 weeks.
Is the system simple to use, can we arrange test calls to iron out any anxieties?
Is the system secure – are we doing all we can to protect the data of all involved?
When we first looked at this option we asked ourselves:
Is what we do important? Yes – if we don’t do it in a timely manner people deteriorate rapidly leading to secondary complications, increased care needs, pain and ultimately premature death.
Is there a way to do what we do remotely? Yes – and we have proven this over many years successfully supporting people overseas.
Are there additional benefits to us in working remotely? Yes – we will save time, costs (which could be passed on to funders) and massively reduce our carbon footprint. We can also offer real time assessment, imagine a therapist meeting an individual, realising they have a positioning need and being able to contact an advisor there and then.
Are there disadvantages / limitations to us working remotely? Yes – we need people to have access to technology and be willing to give it a try. On the first point almost everyone has a smart phone in their back pocket, on the second we are relying on people being willing to experience some technical discomfort in order to do their essential work.
Finally we have to consider the survival of organisations and charities offering traditional face-to-face services. We have to recognise that unless we find ways to support each other to explore new ways of working those organisations simply will not be able to survive the necessary ‘lockdown’. Effective and productive organisations staffed by experienced, motivated and driven people will go to the wall. As a community we all need to share our experiences, what we learn, and the technologies we are using – it is the only way we will all come through this together.
Seeking out and experimenting with new ways of working, particularly when you are also attempting to home school your children or facing anxieties around your financial future, is not easy. But our survival and our ability to offer support to people who need it depends on it. There are organisations and individuals out there with a wealth of experience in this field who can help. Let’s find a way.
Zoe Porter lives in Marple in the North-West. When the virus hit she and another local woman immediately made links with other local people to start setting up a really impressive mutual aid response. Here she tells the story of getting it up and running and the challenges and successes. She offers her thoughts about what she is seeing happen in her town, issues around aligning with statutory efforts and tells of her hopes about what might be sustained once we emerge.
For the latest in our series with people stepping up we are delighted to interview Sarah Clayton @posturalcare. Sarah talks about how critical it is to continue to support people with needs not always generally obvious and how we can and must adapt our methods. This adaptation – via telehealth and other means – is discussed, along with the responsibilities of government, communities and individuals to respond urgently to sustain and retain vital skills that will be needed as we emerge.