In the UK, with our over-stretched, under-staffed and under-resourced NHS, you have to fight for what you need. Most people don’t. They sit back thinking Doctors know best and wait for the wheels of the giant health-care system to slowly grind into motion and it could cost them their lives.
As a teenager I was told my back pain was psychosomatic. At the age of 16 I demanded a second opinion at a specialist spinal hospital and was diagnosed with congenital spinal stenosis and told I needed urgent surgery. But if I’d just taken the word of the “specialists” at my local hospital I would have ended up in a wheelchair for the rest of my life. As it is I’ve lived with chronic pain due to their incompetence for 40 years.
In my thirties I was told my scans were all fine and there was no reason for my chronic pain. I was obviously “just sensitive” and needed to stop being such a wuss. If it weren’t for my own research and request to see a Rheumatologist versed in Ehlers-Danlos Syndrome I would never have been diagnosed with hEDS.
In my forties I was told by numerous doctors that it was impossible to react to all drugs and nearly all food. I was just anxious and my ‘episodes’ were ‘panic attacks’. Again, if it weren’t for my own research and request to see Dr Seneviratne I would never have been diagnosed with MCAD and my ‘panic attacks’, aka anaphylaxis, could have killed me.
7 yeas ago my Mum had half her lung removed due to a tumor. She had the surgery in Newcastle, but was admitted to our local hospital a week after returning home as she was in agony and very unwell. She was there for 2 weeks, they didn’t give a toss about her, and her treatment was so poor and she was so ill we thought she’d die. In desperation I rang the surgeon who had performed her surgery in Newcastle, something you’re not supposed to do, and told him of my concerns. Luckily he was visiting our local hospital that week and asked me if I’d like him to pop in and check on my Mum. “Yes please!” So he did, tactfully suggested to the doctors looking after her that a change in medication might be warranted, and 4 days later my Mum was well enough to come home.
You have to be your own advocate. It is not easy, however. The NHS, on the whole, does not like to be told what to do or to be faced with patients who know more than they do which is often the case when it comes to rare diseases. Doctors can be hugely defensive when faced with a clearly well-informed patient and I have born the brunt of passive-aggressive sarcasm and outright hostility. I don’t give a shit what they think of me – I’m the one living with my symptoms, not them.
Yesterday morning I had had enough of my Dad’s lack of treatment. Knowing that Xmas was looming and fuck all was going to get done over the holidays I took a firm grip on his health care. The local neurologist, after 4 days, had still not rung me back and I was not willing to “leave it with” my GP, as after 36 hours the neurologist hadn’t rung her back either.
From good old Mr Google I had discovered that one of the neurologists at Newcastle, Dr Miller, had a special interest in CIPD and protein neuropathies, so I found his email address on a conference programme and emailed him directly, something frowned upon here in Britain. I didn’t expect him to mail me back, so in the meantime I again rang my GP to ask her what was happening.
The receptionist said that although the GP was still in the building she was just about to leave for the day (it was 1pm) and in any event she had nothing new to tell me as the neurologist still hadn’t rung her back. So I said “if the neurologist isn’t going to ring either me or the GP back we need another plan of action then don’t we!” and asked could I leave a message for her to ring me first thing in the morning. “No” was the reply, “you can only leave a message for a GP if they’re actually on the premises”. “But she is on the bloody premises!” I shouted down the phone, but was firmly told to ring back in the morning. I put the phone down on the receptionist before I started issuing her with death threats.
Within 5 minutes the GP called and said that actually the neurologist had rung her back and said that we don’t have the facilities here to treat my Dad and he needed to see the specialist at Newcastle. Like I’d told her would be the case on Monday! She said she’d contact the Surgeon and request he urgently refer my Dad to Dr Miller, which she did there and then.
However, when I put the phone down I saw that Dr Miller had emailed me back! He was very nice, which was a shock as neurologists can often have arrogant egos the size of a small country as I know from bitter experience over the years, and said he’d be happy to see my Dad but didn’t have an appointment available until 17th Jan. If it were urgent, though, my Dad could be seen in the emergency neuro clinic.
I had no clue how urgent my Dad’s illness is. All I know is that with early treatment permanent disability from CIDP can be avoided and symptoms actually reversed, but as the illness has been missed for an entire year and my Dad has declined rapidly in the last 3 months maybe it’s too late for treatment now in any event? Dr Miller asked for a timeline of my Dad’s symptom progression so I emailed that to him late last night. By 9am this morning he’d already replied that my Dad needs to be seen urgently and he’d passed his details on to the rapid access neurology clinic. Not half an hour later the rapid access clinic called and my Dad is being seen at 10am on Christmas Eve. I feel such vindication that my Dad does need urgent help and I wasn’t just being overly dramatic.
If the GP finds out I’ve contacted Dr Miller behind her back she will probably be well pissed, but I don’t care. If she isn’t going to keep me in the loop I can’t be blamed for exploring other avenues of help and in any event I’ve told her on 3 separate occasions this year that I think my Dad’s kappa paraprotein is involved and that his stenosis isn’t explaining his symptoms and she has dismissed my concerns. Turns out I was right after all.
Make a fuss. Chase things up. Do your own research (with reputable NHS based services) because you have a shed load more time to get clued up than a harassed GP. Be prepared to nudge doctors in the right direction, especially if your disease is one with which they aren’t familiar. If it’s needed, put yourself at the top of someone’s work pile. But be polite, even when you’re telling someone the situation isn’t good enough – doctors are just people, who have lives and worries and stresses of their own. I seem to have found the knack of being assertive yet still deferential, and if warranted I always thank the doctor involved, often by a little card or if they’ve really gone out of their way to be helpful with a bottle of wine or a box of chocolates. We all like to be appreciated.