Live your potential

Voice of the voiceless

I've just finished completing Real Time Feedback (RTF) in the hospital. RTF does what it says on the tin: (anonymous) feedback is obtained from patients and it's instantly passed on. RTF is carried out by central Trust staff, volunteers and governors. This was my first experience and I'm dead impressed. RTF uses a small calculator type device to enter a patient's responses and the device then sends the data back to the administrator's computer. The data is collated and within an hour of my leaving the ward, a report will be emailed to the Senior Sister for action.

There are twelve questions and the answers are multiple choice: sometimes a simple "yes" or "no". Sometimes ("how clean is the ward") more complicated: "very" "fairly" etc. They're well thought through and brought no confusion. There's a form where I can write up any other comments made or issues raised. I asked the Senior Sister whether she found the reports helpful. "Yes, very. I can take immediate action if a problem is raised, for example, if people don't know which nurse is looking after them: I'll gather the nurses and ask them to ensure they introduce themselves to their patients". I think the beauty of the system is its simplicity. I'm given the questions and the device (which is actually designed for school homework but which seems ideal for this purpose). I'm given clear instructions on how to use the machine and how to handle the process.

Despite the multiple choice answers, there's still the opportunity for individual responses. And I'm free to interview whomsoever I wish. I ask the Senior Sister if there are people she thinks I shouldn't interview (those recently out of surgery, for example) but otherwise, it's my own random sample of patients. There is room for some subjectivity and thus discrepancy. "Do you know which nurse is looking after you today?" could refer to the Senior Nurse or Ward Nurse or another. Interviewers will have varying amounts of time so will have more or less commentary to add. But on the whole, it's an excellent system. It's also not a static process: there's going to be a meeting of interviewers to see what changes need to be made. It's refreshing to see such patient empowerment. It's impressive to see how instant the feedback is and how quickly it's given back to the relevant ward. It's encouraging to see how simple the technology is. The corporate sector could learn a lot from Real Time Feedback: how to listen to their customers and how to act on their words.

Less is more. Sometimes

One of the advantages of spinal cord injury over other chronic illnesses (see my post about "neuro-wheelies" vs "spinies") is that you get lifelong care. It's an extraordinary concept and privilege: for the rest of my life, I have access to all the facilities of the Spinal Unit, including occupational therapy, outreach physio and an annual MOT (yes, they do call it that. It involves weighing and measuring and x-rayssmongst other things).

I took advantage of this care last week when I went down to the hospital for a long physiotherapy session. I already have fortnightly physio from the community team here in Devizes, though it's not spinal specific and it's about to end. So this was a chance to go with my community physio to explore the issues I've been raising. First was standing. I use my standing frame at home to go fully vertical twice a day. It's a great feeling to be tall again, to be able to look out the bedroom window, to be higher than my children. It's good for spasms and stretching and digestion. But I can only manage about five minutes before I start to get dizzy from my falling blood pressure. When I stood in the hospital, I managed 15 minutes: it turns out I've adjusted the straps wrong on my home frame. I also discover that I've not been standing for long enough. I'd thought that the simple act of standing would be of benefit, regardless of time. I was wrong: standing for less than 15 minutes is apparently pointless.

Next up was back-wheel balance, a technique which enables you to get over kerbs more easily and which I'm poor at. Some quick tuition and homework gives me encouragement. I berate myself for my lack of kerb-jumping and am gently reminded that each individual finds their own way - that I am just as independent by knowing when to ask for support as the impressive 17 year olds who gleefully launch themselves off pavements. Transfers are discussed and practice on a bed reveals that I'm wasting energy by transferring the wrong way: if I reversed my chair, it would be out of the way with no need to lift my legs over the wheels. Finally, stretching. I rarely bother, because I think it's only worthwhile if I stretch for more than twenty minutes. Again it seems I am mistaken. I need only pull my legs toward my body when in bed for one minute to help them ease. Less is indeed more.

Publicising pressure sores

 I've been asked to give a presentation about pressure ulcers on Friday. My session is titled "A patient's perspective" and it's part of the wonderfully named PTO (Please Turn Over) campaign being run by Salisbury Hospital. My audience will be a heady mix of consultants, physiotherapists, nurses and others. I have 30 minutes.

So I'm putting together a slide show. Yes, that is a picture of my bottom. And yes, that's how a small 1cm by 2cm pressure sore was finally healed - by rotating a large flap of skin over it. You don't want to know the details, albeit to say the surgeon did a great job.

It's shocking to look at the pictures of the ulcer. It started from a small scar and grew to a deep hole. I got it sometime between falling out of the tree, lying on the ground for an hour, being flown to the hospital and lying in intensive care. Yet I was more concerned about getting it healed than how I got it. And that was a slow process that must have added at least five months to my stay, most of which I was on full-time bed-rest. I missed the chance to learn proper wheelchair skills. I missed Griffin's tenth birthday. I had two of my own birthdays in the Unit. My skin is now far more vulnerable around the flap.

My parting message to the staff on Friday will be "please ensure you turn your patients over". And to anyone else at risk (wheelchair users, people who are less mobile and spend a lot of time sitting down or lying in bed), I'd say "check your skin. Every day. If there are marks, stay in bed for the day. Yes, it may be tedious. But losing five months of your life is a lot worse".
 

Vote for me, me, me!

A while ago, I was challenged by a friend who asked "What are you doing, Andrew, to get involved in the Health sector/Spinal movement?". He'd recently been elected to the board of the Bristol Royal Infirmary. As fate would have it, I'd just received a circular from Salisbury District Hospital asking for people to stand as governors. So, spurred on by his challenge, I attended an introductory evening at the hospital about what being a governor entailed. There are 27 of them, they meet four times a year - more if you join a working group - and "Governors provide an essential link between the Trust and its members, feeding back information from the membership that can be used to help shape and plan services for the benefit of local people. They also have a number of statutory duties, including the appointment of Non Executive Directors and considering the Trust’s Annual Plan."

It sounded fascinating, and an opportunity to give back something to a place that had given and continues to give me so much. I could stand as representative of Kennet, one of Salisbury's seven public constituencies. Or, as a spinal patient, I could stand as a "patient/carer Governor who represents the interests of patients from the Trust’s specialist services" (plastic surgery, burns, cleft lip and palate, spinal injuries). I decided to stand as a patient/carer Governor.

The process, managed by the Electoral Reform Society (ERS), is surprisingly simple. I needed no proposers. I just had to complete a basic form and include a one hundred word statement. Mine reads: "I am 43, married, have two children and live in Devizes. In 2006 I had an accident that has left me in a wheelchair. I spent 14 months in the Spinal Unit at Salisbury Hospital. I used to run my own business but am now retraining to become a primary school teacher. I know what it’s like to be a patient. As a governor, I would ensure that patients’ needs and concerns are heard. I would bring my management and fundraising skills. I would ensure that staff, particularly nurses, get wider recognition. Finally, I would improve communications to members."

Nominations are now closed. Voting packs were sent to members yesterday and results will be provided to the hospital by the ERS on 15th May. There are two people standing against me.

So, if you're a member of the Trust ("members are drawn from three groups - Public, Patients and Staff. Public members are the local people that come from our general emergency catchment area and live within one of six areas known as constituencies. Patient/Carer members live outside the general emergency catchment area and have been treated in the Trust's specialist services since 1 January 2003". For more information, and to register as a member, visit the hospital's site) - if you're a member, vote for me me me! And if you're not, keep your fingers crossed...

Postscript: I've just checked with the Trust about voting. You can only vote if you were registered as a member before the voting papers went out. So if you were stirred by my rousing statement and moved to vote for me...unless you're already a member, sorry, you can't. You can always send me messages of support though!

Pain and trauma

If you can't feel pain, does it mean it doesn't exist? A good existential question and pertinent. I was talking about my botox with a friend last night. She was shocked that no one had come with me to the hospital and that within half an hour of the operation, I was driving to Stoke Mandeville for an intense training weekend. "Your body will be in shock. You should have rested". Yes, I did have a very large needle (with camera attachment) pushed through my urethra. Yes, said needle did inject my bladder wall 15 times. But it's the third time I've had the procedure. It feels pretty routine. And because I have no sensation below my arms, I felt no pain. I didn't have a general anaesthetic, though the surgeon did give a local one. Did my body experience trauma? How can I tell? I was extremely tired and have been sleeping very badly, but that's often the case. What other signs might there be? I'm going to have to listen more carefully to the very subtle messages my body might be sending.

Botoxed

I'm in Salisbury Hospital waiting for quarterly Botox, blogging from my iPhone. The botox is injected directly into my bladder to stop leaks. Because I have zero sensation, I don't have or need anaesthetic. I get to eat up to the time of the operation. I don't need to be accompanied. I can drive myself home and don't have to wait for a lift. So I'm one of the luckier day patients. I even get to wear not very tasteful white, thigh length pressure tights. I just need to make sure I don't watch the colour tv screen showing the needle injecting the wall of my bladder fifteen times.

Fathers and their absence

My father didn't feature much in my life. This absence defines me as a parent, as I strive to be everything he was not. So it was strange the other day when Griffin asked "will you teach me how to shave?"

It's the kind of thing fathers and sons do - pass on the secrets of shaving. I didn't have that lesson for forty years. And then, in a strange twist of fate, I was taught how to shave by another man. One of the things people are often told in the Spinal Unit is "you'll do things you've never done before". This irritates me beyond belief. I've written about it here and here. Yet there is a grain of truth in the statement. During my long more-than-year in hospital, one of the (male) nurses showed me how to shave properly, how to leave the skin soft and smooth. So but for my spinal cord injury, I would have never learnt. And I wouldn't be able to pass that knowledge on to my son.