People with disabilities rely on the support and therapies that are provided by social care and health organisations. My son has a progressive condition that effects the muscles in his body and relies on a powered wheelchair for all independent movement during the day.
His cushion, his only wheelchair cushion, disintegrated. It has integral plastic bits and supports his hips as well as hopefully preventing any pressure sores or problems. I did everything I could to manipulate the bits within the gel that constitutes the main part of the cushion and then, when I failed, panicked. I eventually found an old cushion that enabled him to get up and be in his powered chair and, with the help of his carer, arranged small cushions to support him as comfortably as possible.
Then, as he got on with his breakfast and other activities I got on the phone. Between 10.30am and 4.30pm I spoke to a whole range of professionals in the health and social care teams. Many were working from home. I was given advice that was entirely inappropriate…..can’t you get him a static armchair?…..why haven’t you got the prescription for the cushion? (It was originally prescribed by the NHS wheelchair service, now defunct, three years ago, and I never had the professional prescription).
Milbrook, as we all know, now manage and provide wheelchair services in Kent but they were unable to ascertain from their records an exact description of the cushion he requires. However, despite the number of health care professionals I spoke to the customer services operatives at Millbrook we’re the most understanding of my anxiety and, more importantly my son’s need for comfort.
By 3pm he was too uncomfortable to remain in his chair and asked to be hoisted back to bed. I had been referred all over Kent and given phone numbers to offices that were closed. When I rung health care teams back, I was informing THEM of departments that were no longer taking calls. I spoke to administrators in occupational therapy teams who just said they couldn’t help despite my son being on their books as a patient. At one point I was made to feel daft because I didn’t know that these cushions deteriorate over time.
In the end the angelic woman at Milllbrook arranged for an urgent temporary replacement that has now been delivered. It’s not perfect and, when I have the energy, I will be pushing for an new assessment of his posture and seating support needs. Even Millbrook who manage the Kent population’s wheelchair requirement needs, could not be sure when and if assessment clinics would be taking place.
So…..the point of all this is to give a small example of a consequence of the isolation lockdown for people with disabilities. Nurses, community nurses, doctors, health care assistants continue to work tirelessly on the front line, rightly prioritising the most unwell in our society. Therapists who are a part of the team that should be working to support people with additional needs in the community are randomly unavailable.
I am concerned that the routine therapeutic monitoring of unwell and disabled people is being dramatically reduced.
While I am relieved that vulnerable people are not routinely having appointments at over burdened hospitals, my son has had three St Thomas’ appointments cancelled. Telephone consultations might be the answer.
But for many people whose health care monitoring and treatment has been drastically reduced or stopped altogether this situation could bring in increased anxiety and risk.