As someone with a long-term chronic condition, I am a regular user of NHS services. Luckily for me, over time, my needs have become, generally, less acute as we – the medics and me – have all learned to ‘manage’ my relapsing and remitting illness.
Nevertheless, I continue to find every relapse, necessitating hospital visits and treatments, unbelievably stressful because I never quite know how things will go.
On pretty much every occasion, whether it is six or eighteen months between visits, systems, procedures and personnel will have changed, often dramatically. When this goes badly for a patient (i.e. me), as it sometimes does, adding NHS bureaucratic stresses to the heightened stress of a relapse – with consequent physical failings – is just about the last thing anyone – that’s me and D – needs.
Recently, after a long stable period (c.14 months), a relapse kicked in and, as sometimes happens, this one was particularly dramatic and severe. Within a couple of weeks, I’d lost huge amounts of vision, 90% of motor and sensory function in my left arm, 60% in my right, pretty much all motor and sensory function from chest down as well as having problems with my jaw, speech and serious pain in my torso causing breathing problems.
I do know this is the norm for some people and if it was my ‘norm’, yes, I’d manage it but it isn’t. For me, normal is being able to see, speak, eat, move my arms and hands much like anyone else. This was an Eek! moment for me especially because it all happened so fast. In the history of my illness, fast relapses need fast treatment or I might lose function on a longer term basis.
So, I did the usual and called my consultant, expecting to get passed on to his current registrar and called into the day clinic within a week or two for treatment – this has been the ‘usual’ for about eight years now.
To my horror, my consultant’s secretary called back saying, ‘Things have changed. You need to come in, see Dr M and he needs to ask a committee to authorise your treatment. The earliest this can happen is August, is that OK?’
“Er, NO”. I said, horrified. “I shall be blind by then. This isn’t how my illness goes…”
After a little more discussion, she agreed to speak to Dr M and get back to me. I had a most distressing night, worrying myself sick over what might be and fuming about NHS funding and procedures.
Anyway, my fab consultant called me in the same week, took one look at me and tried to get me in for treatment that day. This they couldn’t do but within five days I was in the day clinic being treated … though that was not without its’ own problems (I’ll cover that in another blog posting – it’s all just too dreary to keep whinging on).
Turns out, the authorisation process is only for the expensive drugs and, lucky for me, my illness responds to the cheap stuff (IV methylprednisolone) so I should be OK going forward. But is that enough? Yes, I’m OK because I have a good longstanding relationship with an excellent consultant, I have had a lot of experience dealing with NHS changes and I am articulate and able enough to make my way through the bureaucracy. And, I still got really stressed out. What about others who are not in my, relatively fortunate, position? Less familiar, less able, less support …
It is hell, really … on the patients and the staff too. All this constant change. There must be a better way to make things work that provides a more stable environment for everyone …