television interview

3I had an interview with ITV Thames Valley today, the program will be aired tomorrow at 6 p.m. and I think you can catch it on their website for 10 days afterwards. http://www.itvlocal.com/thamesvalley/

I have been advertising for a carer, and my care profile is complete. I now have a personal assistant working for me during the week, she is called Suzi and things are working very well. My day has become much more productive, and I seem to be eating much better as she is a good cook.2
construction work should start this Monday on the extension and the Pavilion, drainage work first.

Still in the ongoing battle to receive direct payments so I can control my care package, this in the end might involve creating a company to act on my behalf from which I can control my care funding.

I have been fighting a toe infection over the past couple of weeks, but apart from that I’m feeling pretty well during the day.

This is my care profile for anyone that’s interested:

Live-in Personal Care Assistant (accommodation provided) for an energetic 23 year old tetraplegic electronic and computer engineer

Location: near Witney, Oxfordshire

Start Date: Immediate

Situation:

I am a verbally independent 23 year old tetraplegic (paralysed from the shoulders down with no arm or leg movement) following an accident sustained in April 2007. My medical condition has stabilized though I experience intermittent neck discomfort as a consequence of surgical interventions to stabilize my cervical vertebrae. I am a goal-oriented and determined young man, an effective communicator (both verbally and in writing) and have an outgoing personality. I have been trained as an electronic engineer and has strong computer skills: I graduated with a first class degree from Brunel University in 2007 . I plan to pursue employment opportunities during 2008 – 09 with a Research and Development Company. I enjoy my social life (visits to clubs, pubs, cinema and theatre with his friends) and watching football both live and on the television.

Personal Care needs:

I require 24 hour live-in personal care assistance and help with specific tasks including washing, oral hygiene, getting dressed and moving from my bed to a power wheelchair (which I control using a head switch mechanism) and back again with the aid of a power hoist. I require help with purchasing, preparing and cooking food and drinks, with eating and drinking, with writing and handling papers, washing clothes, cleaning my immediate surroundings, and all other manual tasks. I need intermittent neck massage and passive movements of my limbs. I have to be helped to get into and out of his specially adapted vehicle and to be driven and accompanied to events. Occasionally I need help to connect together parts of my computer system (attach cables or press buttons), and I am fully capable of giving all required instructions.

Current requirement :

I seek one key member of my Personal Care Assistance team. He or she will live in at my residence (near Witney in Oxfordshire) full-time or part-time, and provide personal care assistance Thursday PM through to Monday AM. Respite periods during the day could be arranged if required but depend on the availability of cover. I would like to find someone who is healthy and physically fit, has personal care experience, wants to work with a sociable young adult, enjoys preparing nutritious and appetizing meals, has a clean driving license, and is not frightened of computers. It would help me greatly if he or she has previously cared for someone with a spinal injury and possesses basic massage skills. Further training will be available to the selected candidate. The person I am looking for would also be interested in electronic music and clubbing, and be willing – occasionally – to spend long nights out partying.

April 17th 2008

Tom Nabarro

Whizz2000@Hotmail.com ____ press underscore___ press underscore___ press underscore__ press underscore_press_

And this is my letter requesting direct payments from my primary care trust (pct) :

11 St Margaret’s Road

Oxford

OX26RU

March 27th 2008

Re Thomas Adam Nabarro: Age 23: Request for Direct Payment of Continuing Care Costs

I was involved in an accident on April 3rd which resulted in severe injury to my spinal cord, leading to paralysis from below the shoulders. A metal plate was inserted in my neck to stabilize the damaged vertebrae: this became detached after four months and was replaced. I am diagnosed as a C4-complete tetraplegic. I have been a patient at the National Spinal Injuries Centre at Stoke Mandeville Hospital since mid-April 2007.

I am an active 23-year-old, determined to continue living in a productive and vibrant manner including the continuation of my professional career. In July 2007 I graduated with a first class degree in electronic and microelectronic engineering, and am pursuing employment opportunities with a research and development company. My medical condition is now stable and I have been cleared for discharge by the end of April 2008. I’m close to securing suitable accommodation and have obtained mobility assistance.

I am extremely grateful to the Oxfordshire Primary Care Trust for agreeing to cover all the costs of my continuing care. I shall be entirely dependent on personal care assistants as I seek to organize my daily living, work and social life, and – therefore – enhance my standard of living. Because of the degree of my dependence, the choice of assistants will influence the extent to which I can control my life and have a major impact on the success of my reintegration. In addition, I shall wish to manage their hours of work and responsibilities in a flexible manner. I also want to be able to oversee all decisions relating to my personal care and to have as much control over my finances and accounts as possible. This ability to handle as many aspects of my life as possible would increase my self-confidence and independence.

During my rehabilitation I have met persons who are willing to fulfil my caring and personal assistance needs. At least one of these is ideal for fulfilling these important roles. For the reasons stated above, I would like to be in a position to choose those who I employ, and the conditions under which they are employed. I am therefore requesting the Oxfordshire Primary Care Trust to cover my continuing care costs through the Direct Payment Scheme.

However, I understand that Oxfordshire Primary Care Trust now prefers to provide personal care through care agencies and not to make Direct Payments to individuals who need this care, as was previously possible. The use of a care agency in my case would reduce both the level to which I am able to control my personal care and the flexibility of my care assistance. I have no intention of requesting any personal care assistants to work under unacceptable conditions, but consider that I would be better able to improve my standard of living if I attend to the administration of my care myself.

Please would you consider my request for continued care funding from the Oxfordshire Primary Care Trust to be supplied through the direct payments scheme.

Yours sincerely,

Tom Nabarro

___________________________________________________

I have resumed work on the mouse switch project, and I’ve received the access to work report which requires minor modifications before it can be sent to the employer and we can try and arrange a technical meeting to discuss my future role at the company.

I hope everyone is well, it’s nice to have some sun in the UK and is starting to bring out my freckles. I will put some more photographs up soon.

reflections on the run

First: a message from Chrissie, reflecting on her incredible achievement:

“Very many thanks to everyone who supported my marathon run for Tom’s pavilion. in total, the funds raised from the run exceed £7,000, incredible! Construction date for the extension and for the pavilion is set for the 28th, so at last the building work is to be started.

Participating in the London marathon was a great experience in many ways. There is a camaraderie between the runners and the spectators keep you going. There are some great views of monuments etc along the way as well as the bands. I had terrific support on the day from Mary and Judy who got up at an unearthly hour and propelled me to the start, watched at mile 24 and then propped me up at the end. My brother Nick, his wife Liz and my nieces Clare and Emily popped up with their banner at 3 places along the route. Their planning was excellent so I knew where to look and it helped to break up the distance. The conditions weren’t bad. It certainly wasn’t too hot like last year and frankly you don’t actually notice much of the rain. It was however coming down in buckets when I went over Tower Bridge.

It’s a slog at times with the training particularly in the dark and the wet in winter. Thinking about the challenges for Tom spurred me on at times. My thoughts at the start in my running kit and bin liner (to keep warm) were that maybe it is a long way  to go to get lunch….anyway I was pleased with my time of 4h5m and was in pretty good shape at the end. The last lingering stiffness had gone by Tuesday lunchtime as well.”


_____________________

And now some words from me: In terms of my progress, I have had an interesting week involving two articles published on me, one in Oxford mail and another in the Oxford Times. There is a link to the Oxford Mail one below. ITV Thames Valley apparently want to do a television interview next Wednesday, so that will be good fun.  I had an “access to work” assessment at Roke Manor, which involved identifying small adaptations which need to be made to the workplace in order for me to be able to work there, mainly power assisted door openers, small ramps and some computer-assisted technology (simple software).  Hopefully soon I will have a technical meeting to discuss my future role at the company.

080408-oxford-mail.pdf

Looking up

Looking up

Good luck to Chrissie on Sunday in running the marathon, I hope it’s good weather for you. Please sponsor Chrissie to help the pavilion.

my friend Tim Rushby-Smith launched his book yesterday evening entitled “looking up” at Waterstones in Islington.  I was attempting to be there but couldn’t arrange transport in time which is a real shame.  I can’t wait to read the book, he is a very funny guy and has some great views on dealing with disability.  Talking of which I met my friend’s dad, who is blind from a stroke, for the first time in 2 1/2 years the other day and it wa an interesting feeling because I felt I could empathise with him on some level and I remember my thoughts of how I would deal with/or not deal with losing my sight when I met him before my accident.  We talked about people’s miss assumptions and how usually the disabled person is less sensitive to it than the individual who made the assumption, examples are people trying to shake my hand and speaking very loudly to me (or to someone who is obviously blind).

Quite a lot has been going on since my last post, I have been spending a lot of time with my dad and Ellen is off university this week so I get pleasure of her company. Chrissy is soon to do the marathon and I am excited at the prospect of going to see it, best of luck to her and many thanks. Last Thursday I, my dad and a personal assistant travelled to Cardiff to watch a show designed by Ellen’s friend Molly, Chekhov’s three sisters, which was brilliant. Thursday night we stayed at Ellen’s house in Verity’s room (one of Ellen’s housemate’s kindly let me stay in her room), we saw another brilliant play designed by another friend, Tom Moore, and then in the evening we saw Ellen’s play, Splendour, which was a real pleasure to watch and the acting was of a very high standard.

Since then I have been to Winchester where we met up with old friends and we went to the Magic Flute in London, which was very enjoyable.

The main occupation of my time has been with the usual tasks of pursuing care funding, writing letters, care profile to advertise for my care, keeping an eye on the extension developments, looking out for accommodation options and working on employment opportunities.

Planning to go to paleo music festival in the summer which will require lots of planning but is a good target project.

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