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1 Feb 2008

Post number 7: Moving to the Royal Hospital for Neurodisability (RHN)

God, this has taken me a week, I hope the read is worth the write! I finally left the Frank Cooksey in early April 2007 after they gave me a provisional discharge date of July 2006. It just goes to show how little is known about how long the process of recovery from an almost fatal brain injury can take, boy did they get that wrong, or much more depressingly – I am recovering a darn sight slower than I should be. Here I am, over two years down the line and I feel no closer to getting home and the prospect of my life ever returning to normal again is basically gone. That original discharge date made me cry back then. The prospect of spending so long in hospital, of having no freedom or independence for so long was almost too much to bear. By the end of 2006 I was desperate for a change. It’s strange but with brain injury you use your physical improvements (i.e. how far you can walk with a certain amount of support, how long you can stand etc.) As a way of judging your progress but this goes out of the window when you desperately want a change. It was (I think) at this point when Caroline from Southwark young persons disability fund (YPD) got involved (in healthcare language young seems to mean anyone less than 60, seriously, which explains why I’ve had so few patients to relate to in the last 2 years, that, and how many 30 year olds have strokes). YPD are the government body who have basically been funding me since the moment I was admitted to hospital so despite the fact that I feel very messed around by them of late, I am also very grateful to them. I certainly feel that I wouldn’t be here (by that I mean alive) if it wasn’t for them. I was desperately lobbying them to fund me to go to the Royal Hospital for Neuro-disability in Putney (RHN) to join one of the other FC patients who had already gone there, (an hilarious forty-something teacher called Zo who I used to have a right giggle with) as I was convinced I was going backwards in the FC despite the staff and the fact I now had my own room. For the first time since my stroke I felt I had my own space. This had become particularly important to me since I had noticed one or two items go walkies from my meagre possessions (notwithstanding the DVD player at Charing Cross). It wasn’t so much that I had good possessions it was more to do with me personally, I looked like the epitome of a white middle-class semi wealthy person despite not actually having a pot to piss in! Sadly, I think I was the victim of an increasingly disturbing trend. That of “Its OK to take things off people you perceive to have more money than you”. What I call a ‘Kleptocracy’. Nicking stuff off people can never be justified. End of. Even that secretary at Goldman Sachs who nicked more than a million quid off her bound to be an unpleasant man boss was bang out of order. It was in this frame of mind that I began asking Andrew (the ward manager and now my keyworker) every five minutes about whether my funding for Putney had come through. I remember one time he rather sagely said to me.”Putney’s not this Panacea that will instantly solve all your problems” It was round about this time that I began to accept how serious my situation was. I cried and cried when I realised I couldn’t just phone someone up and say, “I’m fed up now ,please come and pick me up”. Having my own room made such a difference. For once I felt like I had my own space and privacy. An immeasurable positive particularly as the guy who had ended up next to me on the main ward liked to play loud Reggae music all morning and have loud conversations with his mother on his mobile about how good at his job, as a janitor at some local school, he was. In early April Andrew told me my funding had been approved. This at the time was great news to me because I felt I was progressing. That said Putney was to be a game of two halves. The first half was to be in Drapers ward. Honestly, I hated Drapers. It didn’t start well when we had the hottest April for years. Because of health and safety legislation and because of the fact that the RHN are so utterly terrified of being sued (thank you US ambulance chasing culture) they couldn’t supply me with a loan wheelchair till I’d been properly assessed by the wheelchair department. The earliest appointment was three weeks so for three sweltering weeks I was confined to my bed. This was the worst torture I’d ever had to endure. One of the main reasons I’d come to the RHN was because it had nice grounds and a reputedly excellent wheelchair department. I could see through the tiny windows of my obviously un-air-conditioned room that it was glorious outside. If this had been Kings they would have used any old chair they had found lying around. But not at the RHN, it seemed that they had taken being jobsworths and bureaucrats to the next level. So having established that things had started appallingly, what happened next? My mobile phone and brand new electric razor vanished, I mean, how low could people stoop? As my favourite character from channel 4s ‘peep show’ Superhands once said “people, like Coldplay, and voted for the Nazis, people, can’t be trusted” It would be easy to imagine that someone with a brain injury might just misplace them. Two problems here. Firstly, my room was tiny and was easy to search, and secondly I had no way of getting the relevant items out of the room. Simple conclusion. They were nicked. After this I didn’t feel safe in Drapers. It was difficult to avoid suspecting everyone who might have been capable of doing such a low thing. Things did not improve, despite the heartwarming success of my 30th birthday party at the end of April. I think it was Drapers that taught me how important the staff are to your well-being. After my good experience of most of the Staff at the Frank Cooksey, my experience of Drapers staff (clinical, therapy and Nursing was diametrically opposite. Above all else I felt the Nursing staff couldn’t care less about the patients, they treated us in much the same way as porters treat students at Oxford Colleges. Mild Irritations that get in the way of the smooth running of the institution rather than the people that the institution exists for. This just wasn’t right but there seemed to be little or nothing I could do. Make a complaint against someone specifically and the nursing staff would just close ranks and not help you. It was at this point I found that being capable of speech was a disadvantage! I discovered that the staff didn’t want to help me for two reasons, firstly because I could talk (unlike most of the other patients) and therefore I could complain and secondly because I was heavy, 6’3” and approx 15st at last count and therefore a risk to their backs. This was brought home to me when I was standing holding a horizontal bar and slightly overbalanced. One of the male nurses was standing next to me (by no means a small man) so I used him for support to stop myself falling on the dreaded floor. To my horror the bloke looked at me like I’d just shot at him, he then pushed me. What a bastard. Not only did I now think they were a bunch of thieves I now thought they were out to hurt, rather than help me. I was petrified. To add insult to injury. The next morning one of the more scary looking male nurses stood over me while I was eating breakfast and repeatedly told me to ‘hurry up’. It was all I could do not to tell him to f*** off I’m going as fast as I can! This was one of the things I hated about Drapers with a passion. The fact that the pace of life was entirely dictated by the Nursing staff. As a patient you had no say. I didn’t just have issues with the nursing staff. There were also serious issues with the therapy staff. God – this sounds like one big long rant. Well frankly it is and I feel it needs to be said. Firstly there was my occupational therapist, a whale of a woman called Lorna with bad breath and brown teeth. Now aside from that oh so appealingly start she also did that thing that all OTs seem to do. They turn up for sessions completely unprepared and say ‘what do you want to do today’. Even if I was 100% I would probably show them the door but given my parlous state the only things I could think of to do involved me being able to walk, or the use of both hands properly. At least if you enjoy a persons company then doing menial tasks slowly and badly is bearable (just). With Lorna they were impossible. Seeing as I’m on a roll saying what I think about my Drapers therapists, I might as well turn the topic to Viji, my diminutive physio. She basically started me from scratch and it felt as though all the previous physio I had painstakingly done at the FC had been disregarded. There I was basically walking (pretty badly with a Zimmer frame) most days. Viji basically forbade me to practice walking in favour of some tortuous (and dull) exercises. I and many others therefore believe I missed a vital opportunity to improve the one thing, which was psychologically most important to me. There were a few chinks of light on Drapers. There was Brad, a Ghanaian healthcare assistant who was always good company, often we would have each other in fits of laughter by speaking made up Italian to each other. Invented by Brad his particular brand of made up Italian was any English word with-iano added to the end. I know what you’re thinking… It doesn’t take much to amuse me. Weeeell, maybe it doesn’t… Maybe it was the delivery of it, between his comedy bouts of African chanting and dancing and his tall tales of success with the ladies. I miss Brad, he genuinely used to brighten my day. There were also Marvin, Leroy and Ali, all physio assistants stationed in Drapers Gym Marv and Leroy were the muscle. They were hilarious and my only reason to look forward to physio. Chatting, laughing and spending time with these guys made doing my desperately dull exercises almost bearable. I still couldn’t really bring myself to do my 2 hours (plus) bed exercises a day, I was too tired and they were too boring. Ali was a lovely little Irish girl who used to make time to come and see me and make sure I wasn’t feeling too depressed and chat to me in an effort to improve my spirits which were at the time pretty close to rock bottom. The only other good thing about drapers was that the wheelchair department finally found me a half decent powered Loan wheelchair that actually fitted me! This gave me a little bit of independence back so when I was really fed up of the environs of the ward day room, my room or my bed I used to take off and maraud around the hospitals many long corridors and sit alone in quiet contemplation in the corner of one of the hospitals numerous Jane Austin-esque rooms. Those of you who have seen the RHN will know what I mean. I was also by this stage quite keen to avoid a couple of the other Drapers patients. You would have thought that solidarity with the other brain injured would draw patients together but as I found out brain Injury is so diverse that it’s often difficult (nigh, impossible) to get people together in a group because some can’t speak, understand, see, hear, stay continent etc… This makes me realise how lucky I actually am… back to slagging off patients then! There was this one guy called Ron who I christened ’1930s man’, mainly because he would burst into ’land of hope and glory’ if there was a program on the ward TV about the war. He was also a miserable old git, but the habit that used to annoy me the most was a toss up between his constant muttering under his breath about how everyone else was the ‘enemy’ or how he constantly used to shout ‘help, nurse, help’ and when one of the staff rushed to his aid he would inadvertently have forgotten why he had needed help in the first place. Now, he probably couldn’t help any of this so it neatly illustrates how a brain injury can rob you of all human decency, reason or logic. It was probably unfair of me to judge Ron like I did but hey Ho, I was mad at him for devaluing the word ‘help’ for all of us patients. Equally, the world has been judging people based on what they say or do forever. I guess another part of the reason I chose to avoid Ron was because I could not imagine him being any nicer even before he had his stroke same with Robert at the FC. Finally, my last gripe about Drapers was their utter reliance on agency staff, (to this day I have an ever so slightly irrational dislike of agency staff. This is why – They are the lowest quality staff that the hospital decides aren’t good enough to be taken on by the hospital as staff nurses, they make little or no effort to get to know patients, they seem to have far less common sense and are unwilling (or incapable) of applying themselves to anything that requires any form of lateral thinking, or they won’t lift a finger if it is anywhere near the boundaries of what their agency contract might say. They also tend to work the most god-awful shifts, nights or weekends, which tend to make these the loneliest times in hospital if you can’t sleep or have no visitors.

Now, I said before that the RHN was to be a game of two halves, well the2nd half was thankfully not to be like my experience of Drapers. Now, at this point you may be wondering what had become of my friend Zo from the FC. Well she had gone straight to a place at Putney that she loved (in my rehab language ‘hated less’) called the Transitional living unit (TLU) where I have been since April 2007.Zo was discharged home in April2007… I am still annoyed about the timing of this because if I’d had someone at a similar stage of recovery to have a laugh and joke with the last 9months would have been considerably easier. My experience of the TLU is best summed up thus ‘definitely the least worse place I have been stuck at thus far’. Praise indeed! The TLU is a standalone modern building about 5 minutes by wheelchair down the hill from the main building. It has the feel of nice student accommodation and for extra edginess is on the edge of a rather gritty south London estate. It’s got all the right accoutrements, Kids hanging around on street corners, crying babies, screaming women, barking dogs, those groups of kids on those bloody annoying mini motorbikes. It’s like being back in Brixton again! (To those who don’t know, where I used to live). The thing that makes the TLU virtually unique in terms of atmosphere and unfortunately expense to my Healthcare Trust is the staff. Instead of having a traditional nursing staff they have a pool of about 11 rehabilitation assistants (RAs)(for a maximum of 9 residents) who are mostly psychology grads aged early 20s to early 30s who basically carry out the work a nursing staff would normally do, the emphasis being on trying to support you with day-to-day tasks that you’d need to do to survive in the community with minimal assistance. 2 of them are on (minimum) per shift and they have always provided intelligent people to talk too. There is also a clinical nurse whose job it is to line manage the RAs and dispense medication to the inmates. There are also a therapy staff (physiotherapist, OT, Speech therapist the and a senior management staff – While I’ve been here the unit has been lorded over (and I do mean lorded by a Kiwi Lady, a consultant nueropsychologist called Sonja, a woman so ruthlessly ambitious she seems desperate to show the world that she’s the boss she frightened away (with the threat of suing her) a counsellor that my sister had paid for. Sonja chose to get rid of her because she felt her toes were being trodden on despite my pleas to the contrary because I enjoyed talking to Louise. With my business hat on, I’ve no idea how this place can be financially viable. Considering that in the nine months I have been here the most number of patients has been 5, it is small wonder that a lot of healthcare trusts shy away from funding patients to come to places like this and I had better get back in my box about how tired I am of being here and talk up just how fortunate I am. I could be in a much worse place, but it’s so difficult to see it like that when the bottom has fallen out of your world. One thing that still really frustrates me is the fast turnover of staff that seems so symptomatic of the medical profession. I would say that 70-80% of the healthcare staff who have dealt with me over the last 2 years have moved on to other healthcare jobs in different locations.This is clearly the way that healthcare professionals move up the food chain.For example at theTLU 7 staff have moved.Unfortunately, they all happen to be staff members who Really improved my shoddy life.
Few who met him would ever forget him.One of the best blokes I have ever met, I’m crying writing this but I miss Derek most of all (the comedy glaswegian Clinical Nurse)… Now plying his trade somewhere in Sweden (his attempts at linguaphone Swedish still brings a smile to my face) and I still maintain to this day that his main reason for moving to Sweden was because as a country it’s on a similar latitude to Scotland. Then there was Niall(an RA) an hilarious Irishman whose encyclopaedic knowledge of Trivia was as immense as it was because he used to make stuff up.The there was my favourite, an Aussie called Natasha. My favourite because not only was she lovely but I remember one particularly cold morning that without asking at about 4AM she put an extra blanket on my bed. It’s acts of extreme kindness like this that have really stuck in my mind. There was also lovely lucy, so called because myself and another patient called Mike thought it best summed her up. Mike was a top lad, here because of a nasty car accident, he was even younger than me (poor guy) but he had a great sense of humour. He coined the rather brilliant phrase that I’ve often used when someone has tried to give me a hard time… It simply goes “leave me alone, I’ve got a brain Injury”,add expletive for effect,the man was a legend! Although I was obviously pleased for him, in the same way I was for Zo that their progress was enough for them to go home, I was gutted to see them go home.There was also the unforgettable Chrissie whose impression of Vicky Pollard (the pink tracksuited chav from Little Britain was GENIUS! Finally,of the RAs,that have left, there was beautiful and sweet Swedish Hannah, no prizes for guessing why I was sorry to see her go. There was also Patrick, Sonja’s assistant Psychologist. I enjoyed our chats and the work we did on my mood and fatigue. He did his best to try and improve both by trying every trick in the book and taking me through an arduous round of cognitive behavioral therapy. One day we came up with a great concept. I was feeling particularly worthless at the time so Patrick told me to think of the most worthless and worthwhile people I could think of. For worthless I came up with a half-wit I had once had the misfortune of meeting in some god-forsaken club somewhere, a guy called Steve Prince. For the most worthwhile, I went for a guy called Charlie Mayfield, now chairman of John Lewis (in his early 40s).With Steve at one end and Charlie at the other, Patrick told me to rate how worthless I was feeling. The Prince-Mayfield scale was born. Has a nice official sounding ring to it doesn’t it? A bit harsh on poor Steve though. But in no uncertain terms does it remind me of how incredibly supportive my former employer, John Lewis have been, I don’t thinkI could have hoped to have worked for a more supportive company. Not only do people I used to work with frequently visit me but my wonderful former boss (Helen Keppel-Compton) comes to see me regularly. In fact on one day in the FC, Charlie Mayfield (of Prince Mayfield scale fame) came to visit with Jill Little (my old bosses boss). Firstly,let me just say that was one intimidating visit, secondly, how unbelievably nice of them . Effectively, the two most important people at my previous employer had given up their incredibly valuable time to come and see me. I couldn’t see that happening at any other company. In the same breath lets not forget Jackie Kennards amazing effort at raising several thousand pounds via a sale of samples to partners with the proceeds donated to the Charing Cross stroke unit and the FC. Jackie(who Used to be my office motherand always used to look out for mat work has now sadly retired from JLP but her and her husband Selwyn have been great friends to me and my family over the last couple of years . Basically as you can no doubt tell, the last two years have been a little hard but the help I have received has at times been overwhelming. But there is little doubt in my mind that the people it has been hardest for are my close friends and family, who have been an amazing support. I have no idea how people who suffer this kind of misfortune cope if they don’t have the same help that I have had, First and foremost my incredible parents who have tirelessly visited me since day one. Not only have they had to travel miles ( because they live more than an hour by car away . They have also had to deal with effectively being homeless and living with no possessions in a rented house, this is because their house that they have lived in for the last 25 years burnt to the ground in October 2006. If one good thing has come out of my stroke is the fact that when the house was struck by that fateful lightning bolt they were in Putney visiting me!oh, the Irony. I suppose there are a couple of bits of news worth sharing. The good news is that they were at least insured fully –ish for the building, but according to my mother the contents are woefully underinsured. Quite how you’re supposed to put a price on 25 years of possessions is beyond me. The bad news was that because of my illness they had basically emptied my flat of all my possessions and taken them home . Everything I own has been destroyed. To add insult to injury it is apparently uninsured. The good news is therefore that my parents weren’t in the house and thankfully they were never at risk. Possessions can be replaced, people can’t. Friends have at times been even more important than family. For example my long suffering now sadly ex girlfriend Natasha who I have put through hell. Not only did she basically put her life on hold so she could be at my bedside when I was in real dire straits in Charing Cross but she has given up so much to come and see me in various parts of south London (she has always lived 1hour+ away). I owe so much to her. I am also incredibly grateful to my good mate Tony Reid for organising so much and letting people far and wide know that I am in hospital. Also to those who helped set up the Dom Pardey Trust which is helping me through my recovery. People that instantly Spring to mind are Helen Vaugn-Jones,Tristan Clark and Matt Hancock. I also strongly wish to thank everyone who has donated to the trust especially those who have run events,Mike Uberoi and others at Walton Heath Golf Club, those planning events, Simon Winstanley, Shaun Rowland,Jonathan Edwards,Hannah and Balt for organising a special Becomeone (a legendary party I used to go to) at Inigo in Clapham on March 1st to raise money for the trust . Without this help I would never have been able to get my amazing wheelchair which is thousands of times better than my old one and has opened up much more of the world to me. I live for my visitors , friends and family, every decision I now make takes into account the effect it may have on the most important thing to me, friends and family and my network of support. When I summon the energy for my next post,I will try and outline the sketchy plans for the future and believe me they are sketchy. Right I’m exhausted now and if you’ve read this far you probably are to. Thankyou and goodnight!

2 comments:

blueday said...

Were you at Frank Cooksey in April2006?

When you had your stroke had you been drinking with your mates...perhaps a stag night when you were locked in the bathroom?

leehuck said...

No education is necessarily easy, but knowing what to expect and how to go about it all will make the process as smooth, hassle-free and hopefully successful as possible. Visit great info.

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