Pathways & Cul-De-Sacs
I don’t like the word “Pathways”. It’s another example of bollocks speak.
Steven has now been in pain for four weeks. He is in terrible agony when he sits down, although the pain seems to ease on laying down or standing up. In the past week we have been to the GPs four times; had four consultations with them over the phone and been to A&E four times. We still don’t have a diagnosis. Yesterday, Steven went to have another XRay. The car journey was agony and brought on a pain induced meltdown. It took ten minutes for him to get out of the car because he was in so much discomfort. A paramedic stood and watched the whole arrival and on the point of Steven stepping out of the car, she chose to walk in front of him through a very small space. Unfortunately, Steven kicked her. She called security who wanted to push for Steven’s arrest. Thankfully, one of the staff in the hospital allowed him through for the XRay and by this time, the pain subsided and Steven calmed down. As they were leaving the hospital, security had called the police and there were 8 officers waiting for him. The police were great and saw what was happening immediately. They allowed Steven to get straight back in the car and come home. No further action. By the police. Who knows about medical further action? We’ve now got to wait for those results and then for an appointment with the urologist to do a scan. As one of the support workers shouted at the security guard, “THIS …..IS….. ABOUT……PAIN”. Nobody seems that bothered about that.
I’ve learned a lot of the past couple of years about “reasonable adjustments”, so when I got home, I checked out the Trust’s policy for the learning disabled. There are three pages on Hillingdon Hospital’s website devoted to its policy and a whole page devoted to the “role of the learning disability nurse”. A learning disability nurse? This could be the answer to our prayers. On the website, it talks about her role as “creating pathways”. There’s a lot of facilitating and co-ordinating going on. She/he is the bridge between the patient, the carers and the medical staff. She can arrange things that will cut down the anxiety the patient might feel having a hospital experience. It couldn’t be better, could it. I thought I might ask her if she could push through the scan; perhaps arrange an ambulance for Steven to get to the hospital so he can lie down and perhaps avoid the possibility of a pain triggered meltdown before he’s even seen by the staff. I decided to phone her this morning.
The learning disabled nurse only works on Thursday. There is only one of her. And much of her time is spent in meetings.
That was the final straw. I started to search for private clinics. As we still haven’t had a diagnosis, it’s hard to find the right service but Steven shows all the symptoms of a kidney stone (or stones), so that seemed the best place to start. I’ve found one who can see him tomorrow. There’s a consultation fee, a charge for the scan and then we discuss the fee for whatever treatment is needed.
I spoke to a friend about it earlier and whether I should use Steven’s damages to expedite this. I can moan all I like about the service at Hillingdon but it’s not going to get Steven any better. Over the last year, my idea that the money would be important for Steven’s future has taken a big knock. As my friend said, “there is no future”. Such is the nature of our life and the systems we find ourselves in, there is only a present tense.
The big irony is that the State had to pay Steven that money for a horrendous failure. Steven is now having to use his money to deal with one enormous failure after another. But if it restores him to health, that is the most important thing.
Don’t be fooled by fancy talk of “pathways” – they are dead ends. They are certainly not designed with the patient/client in mind. Re-reading the “roles of the learning disability nurse”, I can see that it is all lip service. It is all “promoting” and “partnership working” – nothing hands on that might be useful to someone in pain.
From → Social Care