Please send out to anyone you know who’d be interested.

http://the-hermeneutic-of-continuity.blogspot.com/2011/02/priority-trust.html

Sunnier Days is the very personal name I have given to the ‘vehicle’ enabling me to make some of my ideas around disability a reality. Those close to me refer to my positive attitude, my love of sunny holidays and because my projects (the blog, work with Hackney council and DisabilityLib) are about improving things – Sunnier Days felt right and was born!

So what is this project about? You may remember last May I decided to find a venue, inspirational speakers and market an event for disabled people. My friends, family and blog readers gave positive feedback, however the guys in the BBC ouch chat rooms were more sceptical. I managed to get a great venue in Shoreditch – London, the BBCs disabled tv presenter Natasha Wood and disabled model Sophie Morgan, and 20 people attended! It was the first time I have ever done something like this. It was challenging, scary, great fun, uplifting and a big learning experience.

The feedback showed that there is an appetite for dissemination of inspiring and informative information to disabled people, their friends/family and professionals. The down side was the costs associated with hiring a venue, putting on catering and transportation to the event. I continued with my blogging, looked at social networking sites and pondered many other ways of providing a platform for debate, sharing and positive change around disability.

More recently the ability to run a seminar online was brought to my attention. Part of my new years’ excitement was around the prospect of running the Sunnier Days events (like last Mays), but straight to someone’s living room.

Having a disability called Spinal Muscular Atrophy I have been a member of the charity for my impairment since birth – www.jtsma.org.uk – (I was also on the board of trustees for 2 years). We have partnered up to launch this idea for their members and my blog followers. ‘Seminar in your slippers’ has been officially launched this week!

To see my cheesy promo video and to download the flyer with full details, please click http://www.jtsma.org.uk/seminar_in_your_slippers.html

Feel free to retweet this, email friends and phone anyone who might find this useful. I hope, even with a couple of tweaks from these 2 seminars, that ‘seminar in your slippers’ can become a great innovative way of delivering informative and inspirational details to the living rooms of the disabled community. Please do sign up, join us on the scheduled dates and provide feedback so we can achieve this!

Exciting times hey

By way of a little background to those who haven’t read any of my previous travel articles, this trip was part of my travels around the world during my time off from work. I work as a solicitor as at a commercial law firm in the City of London and took up the offer of extended leave when I was offered the permanent role in July. So far I had travelled to Scotland, Belgium, Italy, Spain, Poland, US and South Africa, and this Singapore and Bali holiday was to be the last leg of my travels before starting my permanent role in January.

I booked my flights with Singapore Airlines, who I have to say were really good and provided an excellent service.  I had a three day stop-over in Singapore before heading off to Bali. But when reaching Singapore a mini-disaster was encountered, where I discovered that my wheelchair charger was not working and couldn’t be easily fixed. This had the potential to ruin my holiday, as I am unable to walk at all, and I had only about a day of charge left in the wheelchair. I really did not want to spend an entire holiday trapped in a hotel room with a wheelchair on a low battery. In my jet-lagged state, I frantically phoned Otto Bock (the company which makes the wheelchair) HQ in Germany to find out they had a dealership or engineer in Singapore. The contact they provided was unable to help as he all he did was process sales orders for Otto Bock in Singapore. I then remembered that I had used the charger of a friend who is also a wheelchair user when we travelled to California, which was made by Invacare (another large mobility products company). I was able to track down an Invacare contact in Singapore by calling Invacare Asia HQ. Unfortunately, all this contact could do was provide me with the name of another contact, who in turn gave me another number to contact! This carried until person number 8 on the chain of contacts told me of a mobility store he know of which sold powered wheelchair and chargers. I went to this store the following morning, and was fortunately able to buy a replacement charger which worked. Disaster averted! Holiday saved!

Aside from the little drama when I first got to Singapore, I had a fantastic time in the city. I have some good friends who work in Singapore, and it was great to spend time with them. The ease of travelling to and around Singapore made it all the better. Singapore is an incredibly modern and efficient city, thus accessibility and facilities for wheelchair users are as good (or even better) as anything you could find in Europe or the US. I was able to easily find accessible taxis (http://www.smrt.com.sg/taxis/our_services.asp) and a hotel which had the wheelchair access and roll in shower I needed (http://www.meritushotels.com/en/hotelinformation/marina-mandarin-singapore/about). To my surprise, while in Singapore I also discovered that the metro was wheelchair accessible, which meant that I did not have to always book taxis, and hence save quite a bit of cash!

After three great days in Singapore it was time to catch the flight to Bali. As accessible transport and accommodation are not so easy to identify in Bali, Andrew and I managed to find a local tour operator called Bali Access Travel (BAT) (http://www.baliaccesstravel.com). BAT have a wheelchair accessible van with space for two wheelchairs and use two hotels in the south of Bali in a place called Sanur, both of which have specially adapted rooms. We spent the first few days exploring the island, which included a couple of road trips into the mountainous regions of the island where we were able to see the Kintanami volcano and Mount Agung. We also spent a fair bit time chilling out at the beach on the days when we had not hired the van.

During these first few days we also finalised our diving plans. We had arranged an adapted diving session through BAT who in turn used a local diving organisation called the Bali International Diving Professionals (BIDP) (http://www.bidp-balidiving.com). Our dive was to take place on the east coast of Bali at a resort near the small town of Tulamben. The resort of Tulamben is a popular Bali dive site as it is the site of the wreckage of a US Navy transport ship, the USAT Liberty, which was sunk by a Japanese submarine during World War II. As I had never been scuba diving before, my dive would be an introductory dive, whereas Andrew, who had been diving many times before his accident and had his PADI diving certificate was able to book a full dive session to see the wreck. As Tulamben was on the other side of Bali, we planned to stay there for two nights at an accessible guest house which BAT had identified.

When we arranged the dive, in all honesty we had no idea what to expect! We hadn’t a clue what “adapted disabled diving” would entail and what kind of accessible facilities would be provided. On arriving at the USS Liberty Dive Resort we realised that in Bali “adapted” meant that there would be lots of strong and friendly people provided by BIDP to help, but absolutely nothing in terms of accessible facilities! At the resort, there were lots of large stairways to navigate which required the help of the BIDP team and about four portable ramps. This was no simple feat as Andrew and I were in two heavy powered wheelchairs, and all this was just to get down to the beachfront. On a patio covered area of the beachfront, our dive instructors went through the safety steps, gave us a basic tutorial of how to use the equipment, and as this was my first dive, taught me how to equalise the pressure in ears. This tutorial also included learning some all important key hand gestures to indicate if there was something wrong!

The next challenge was getting changed into the wet suit. There was no accessible changing area, so we had to improvise! I took my portable hoist with me, so in the end, I got changed on the floor, with a member of BIDP team holding a couple of towels up to give me some privacy while my PA got me ready. The wet suit felt a little strange, but I was very excited, but was a little nervous about the next step, which was to lift me into the water.  Again, some improvisation was required. We basically put the hoist sling on me as if I was to be lifted by the hoist, but taking the place of the hoist would be six very strong Balinese guys and my PA, Jozef, who is also very strong. My two dive instructors were already in the water, and the plan was to lift me out to sea to the waiting dive instructors, who would strap the oxygen tanks to me while lying on back in the water. Here is a video to show you http://www.youtube.com/watch?v=6DLngk4jm2g&feature=player_embedded

Fortunately, all went to plan and I was safely lifted into the sea, where my two dive instructors attached the oxygen tanks to me, and I started breathing via these tanks. We then slowly went underwater with one of the instructors holding on to me, and the other always in front of me to check I was ok and able to equalise the pressure in my ears. Going underwater for the first time and breathing through the oxygen tank was an insane experience. The adrenaline rush was exhilarating and exciting, and I as became more comfortable with short and shallow dives, we were able to dive deeper to a depth of about 5 metres. Being underwater was amazing. The sea life was so colourful and beautiful, and I felt the most bizarre sense of tranquillity just watching shoals of fish swim past me. In the weightlessness of the underwater world I was able to move my arms and legs a little. Apart from when I am asleep, I am always in my wheelchair, so it was a great feeling to escape the confines of my wheelchair and have the freedom to move my body. This is a video of me underwater http://www.youtube.com/watch?v=gFDETicgipw&feature=player_embedded

In the final few minutes of the dive, I was able to see the distant outline of the stern of the USAT Liberty shipwreck, which was an unbelievable sight as it was teeming with coral and sea life. The dive unfortunately had to come to an end and sadly I had to head back to the surface. To get back into my wheelchair, a mass of people each grabbed a strap on my hoist sling and lifted me out of the water and back onto dry land.

For the rest of the day and pretty much the rest of the holiday, I was on an indescribable high. This was the most thrilling and exciting thing I had ever done, and I simply can’t wait to go diving again. We returned to Sanur from Tulamben the day after, and the last couple of days of the holiday were spent relaxing before commencing the very long journey back to London.

The Bali scuba dive was the biggest highlight of my travels, and I can’t strongly recommend enough anyone with a disability trying a scuba dive as long as it is a medical possibility. As I write this article, my work start date draws near, and in the next few months the only thing I will be diving into, is a busy office with a massive pile of work to do! But nonetheless my aim for 2011 is to hopefully complete my basic scuba diving certification and hopefully go another dive in the not too distant future.

Martyn’s blog entries provide a great account of our trip!

http://www.prioritytrust.org/blog/travel-planning-with-my-disability-its-10-times-more-important/

http://www.prioritytrust.org/blog/accessibility-in-las-vegas/

http://www.prioritytrust.org/blog/california-dreaming-teething-problems-and-jack-black/

This is an article about my most incredible adventure to South Africa which took me to Johannesburg, the Kruger National Park and its surrounding highlands in the province of Mpumalanga.

On first glance it would be reasonable to think that more adventurous travel such as an African safari would be out of reach for a person with my level of disability. However, this was made possible thanks to an amazing tour operator called Endeavour Safaris (“Endeavour”) which specialises in disability travel.  I found Endeavour simply via Google, and took the plunge and booked a safari holiday with them to Johannesburg and the Kruger National Park.

Apart from being very long, the flight to Johannesburg went smoothly. On landing at the airport late in the night and waiting in the plane to be lifted out, I was greeted by the most cheerful airport passenger assistance staff, who were more than happy to lift me out of the plane and into my own wheelchair. However, my wheelchair did annoyingly have a small amount of damage to the armrest, which although had no effect on the utility of the wheelchair, was still rather irritating. There was no point making a big deal out of it in Johannesburg as the repairs would need to be done back home.

We were met by our guide at the airport, Andy from Endeavour who took us to our nearby hotel for the night. The next day we travelled by road in a wheelchair accessible van that we were to use for the entire tour, across spectacular countryside to a guest house near a town called Sabie that was about 40km from the entrance to the Kruger. The guest house was fantastic in terms of its beautifully stunning location and was run by the incredibly hospitable Zeederberg family. The family had adapted their guesthouse by placing ramps around the grounds and a further ramp in the bathroom to make it “roll-in”. The lodge was used for the next couple of days to explore the surrounding highlands, where we saw the Blyde River Canyon, God’s Window, Lisbon Falls and Bourke’s Luck Potholes. Each site a spectacular and awe-inspiring feature in what can only be described as an awe-inspiring part of the world.

After two nights in the highlands, we proceeded to the Kruger National Park. We were to stay in a camp within the Kruger, which had guest rooms that were wheelchair accessible and had in roll-in showers. In the Kruger, each day we would go on two driving tours lasting three hours each at 5am and 3pm. Yes, 5am in the morning! Andy, our guide, was really experienced, and seemed to intuitively know where to find the wildlife. No easy feat, considering the Kruger National Park is about the size of Belgium! Over the several days in the park, we saw lions, leopards, buffalo, elephants, rhino’s and a plethora of amazing creatures that roamed free across the vast and wild expanse. Seeing these animals in the flesh and sometimes within metres of our van was simply breathtaking. However, notwithstanding the brilliance of the wildlife and the experience of being there, it did require a level of physical endurance that was a little testing. The heat in the middle of the day was pulverising, where temperatures could easily reach 42 – 43^OC, which I found very tough to handle, given that air conditioning was not always available in all parts of the camp. Nonetheless, me and the rest of the tour group battled through the conditions and had a wonderful time in the park.

The final stage of the tour was to spend some time in Johannesburg, which included a tour of Soweto, an epicentre of the fight against apartheid. Our tour of Soweto covered the key sights such as the Apartheid Museum and the cultural district. Soweto was a moving place. Monuments to those who had lost their lives in the struggle against apartheid were numerous. Extreme poverty and wealth were side by side, but at the same time, the city was colourful , vibrant and home to a fantastic vibe and very hospitable people.  We finished the tour by driving past the stadium used for the football World Cup final and the Johannesburg commercial centre. Unfortunately, Johannesburg can be a little risky for the uninitiated due to some areas of the city having a high crime rate. Therefore, evenings were spent in the hotel! On the final day, I met up with a friend who I knew from university, before heading back to the airport for the long trip back.

My time in South Africa was incredible. Prior to travelling there, I would have thought that Africa was inaccessible for someone in a wheelchair. But Endeavour Safaris made this possible. Their guides were very helpful, the hotels were wheelchair accessible and their van was specially adapted for a wheelchair passenger. South Africa was a brilliant adventure and I cannot recommend enough anyone else taking up a similar challenge to explore a wonderful part of the world!

Wow! What a week. Firstly, since my BBC breakfast appearance and more importantly the blog on the DLA consultation. General feedback from the ‘one month before heartbreak’ blogswarm has been positive. It received coverage on the following links, as only a starter and taster:

http://www.guardian.co.uk/commentisfree/2011/jan/18/disabled-protesters-one-month-before-heartbreak
http://www.goodaccessguide.co.uk/news/info.php?refnum=544
http://www.benefitsandwork.co.uk/news/latest-news/1285-protests-against-benefits-cuts
http://www.communitycare.co.uk/blogs/service-user-voice/2011/01/disabled-people-and-service-users-will-be-heard-we-will-be-listened-to-ombh.html#more
http://liberalconspiracy.org/2011/01/17/does-the-broken-of-britain-campaign-need-celebrity-support/

Thanks to Emma (TweetHandle: @funkyfairy22) for providing this information. Also Kaliya (TweetHandle: @Bendygirl) was on Talk Radio Europe speaking about Broken of Britain and the great campaign http://thebrokenofbritain.blogspot.com/2011/01/benefit-claimants-fight-back.html. Lets hope the government have taken note of this and reconsider their policy decisions around DLA next month, and indeed on disability issues generally!

In light of the recent cuts to government spending, we (Martyn Sibley of London and Richard Currie of Manchester) are writing to convey our deep concern at the affects they will have on the disabled people of the UK. We are only 2 of 10 million disabled people in Britain, but our views are by no means unique. This letter forms our contribution to a large online campaign – 1 month before heartbreak. Many people are blogging today to urge your good selves to consider aspects of the Disability Living Allowance and general disability reforms, and how they will truly work in the ‘real world’.

The DLA provides vital financial assistance for the extra costs incurred as a result of being disabled. The consultation is looking at tougher assessment criteria (to reduce the number of claimants) and even withdrawing the vital transport component of the allowance. It ends on 14^th February 2011. Furthermore there are discussions to disband the Independent Living Fund, assisting disabled people to live full, self directed lives. Please don’t break anyone’s heart on Valentines day. Or for that matter, ever!

We would like to start by acknowledging  the social, legal, economic, political and technological improvements of the past 50 years . With the social model of disability being enforced through laws and motions such as the Disability Discrimination Act and the UN convention , disabled people have seen vast improvements in societal inclusion. We both have had happy childhoods, met good friends, accessed our education system to Masters level and have ambitions the same as anyone. We personally strive for full independence using our electric wheelchairs, accessing social care provisions and using DLA for the extra costs we incur as disabled people.

As a positive recognition of the coalition government, we are glad you see the merits of Personalisation. The key here is that it may not be for everyone. With such a varying scale of impairments in the disability world, person centred plans are vital. Where possible, people should direct their own provision of services, giving them the flexibility, choice and control they deserve. When certain tasks and responsibilities are simply too much, this must be recognised and solved innovatively with brokerages and other support services. Really the crux of Personalisation is to improve disabled people’s lives, not to cut costs and corners. Please ensure there is enough money in the coffers. It is difficult to employ a PA to carry out care-work 24/7 under the minimum wage. Furthermore without the foundations of care in our lives how can we work, be financially sustainable, socially engage and be happy and healthy?

Unfortunately, even in 2011, this all has not resulted in full inclusion. Physically there are many buildings, transport links and leisure activities that are not accessible. Attitudinally many people still have cautious and incorrect views on disability. It is widely known bus and taxi drivers get agitated because a wheelchair user requires a ramp. Employers often feel concerned of disabled peoples’ ability to carry out a job, instead of assessing them on actual merit. We already need to improve a lot of things despite the progress made. So why make such regressive policy decisions?

With disabled people finding access to qualifications more difficult, trying to change attitudes and access to jobs in an already very difficult labour market, and having less disposable income because of the many extra costs incurred (more expensive travel methods, purchasing and repairs to necessary equipment, central heating costs, extra rent to provide space for PAs…), why slash DLA?

We know there are people claiming it who should not. We totally agree this should be stopped too. However is it the core reason our country is in debt? No. Is it fair that while stopping the fraudsters, people who really do need DLA are worried if they will keep it, worried how they will be assessed (we for one are not attempting to run on any machine to fall over and prove our disability), and others may not even bother applying when they ought to? No.

Furthermore, if you are to disband the Independent Living Fund, supporting 21,000 disabled people with their care needs, consider this. If local councils struggle to financially support 50% of our care now, how will they fill the void left from the ILF, when their overall budgets are being slashed as we write this?

The point is with so much positivity to celebrate, but with so much more to improve, why make decisions that will entrench disabled people back into poverty and exclusion? We say:

• Invest in disabled people with Personalisation social care, but for the right reasons. Listen to the challenges disabled people face, work with us to find solutions and be willing to fund this properly. In the long run, the spending and investment will lead to disabled people with better education, better skills for the workplace, better chance of being given employment (encourage remote working to become the norm when appropriate) and the means to live happy and fulfilled lives
• Acknowledge that DLA assists with the huge additional costs of being disabled – care and mobility. Stop anyone from claiming falsely, but in a way that doesn’t scare monger disabled people and doesn’t portray an image of lazy, slacking scroungers. Work with disabled people on the assessment methods and don’t break our hearts!
• Keep the ILF. Or at least find a plan to fill its void. One that will be effective. Do not cause unnecessary stress to those who rightly use it and will always require social care funding

Feel free to send any responses, thoughts or questions to martynsibley@hotmail.com and lets work together. The deficit can be cut and disabled people can be supported to live inclusively. They are not mutually exclusive occurrences.

Kindest regards.

Martyn and Richard

http://martynsibley.com/

http://thebrokenofbritain.blogspot.com/2011/01/more-one-month-before-heartbreak.html

And the BBC article……….

http://www.bbc.co.uk/news/uk-12176854

I went to University of Derby and achieved a 2:1 in a Marketing Management degree and got Distinction in an Advanced GNVQ in Business after school.

I moved to London to pursue my career aspirations, own my own apartment in Fulham and have a team of live in Personal Care Assistants (PA) 24/7.

I’ve always strived to be a high achiever and leave a legacy.  March 2010 was no exception – focused on my BBC career, building my coaching portfolio, chairing a national disability charity (JTSMA), producing a pilot for a new business entertainment TV show and more.   Christmas 2009 was ‘planning time’, to decide what I wanted to achieve in 2010.  So I produced a Mind Map outlining my goals.  I lived by Stephen Covey’s principal of Begin with the End in Mind.

Whilst proceeding with vigour I developed a chest infection, which is common during winter.  However, after my second course of antibiotics I became dehydrated from vomiting and stupefied.  I go to A&E, had X-Rays and blood tests and the doctor admits me with a severe chest infection.  One morning I’m found having a seizure and fighting for air.  The doctors and nurses rushed to my bed and brought me around again.  My chest infection got worse and I was suffocating and couldn’t breathe.   I went into a coma and was put on life support to keep me alive – I lay in intensive care unconscious for two months.

I developed multiple organ failure – my kidneys, liver and stomach stopped working and I was on dialysis.    An MRI scan revealed a bleed on my brain.  A nasal gastric (NG) tube fed me nutrients and I had a tracheotomy in my neck.  I had thirty tubes, bags and bottles connected to my body in all.

My Mum who had practically moved to London to be at my bedside went away a weekend break, however, soon after, the doctor summoned her, as they didn’t think I’d make it through the night.

In spite of this, I stabilised and two months passed before I woke from my coma.  As I opened my eyes I was really confused.  I thought I was 100 years old, that the BBC had fired me and the physios were out to kill me.  At first I couldn’t talk.  I used my eyebrows to say Yes (raising them) or No (a frown).

I asked the doctor whether I almost died and he honestly replied “yes, you almost did and you’re lucky to be alive”.

My whole world had shattered.  Not a lot made sense.  I didn’t care that my hair was falling out from the medication.

As I was just out of my coma one of my PAs handed in her notice and I was angry at her ‘bad timing’.  I began poaching the nurses and one them introduced me to her niece who I interviewed in ICU and offered her the job.

When I first sat in my wheelchair my arms were so weak I just drove in circles.  My first time outside ICU was to the tropical fish tank with a tranche of nurses, tubes and equipment.  I stared mesmerised at the fish.  I realised at this moment that what I appreciated in life had shifted if fish spellbound me.

An OT visited daily to exercise my arms and hands to get them working again.  I couldn’t hold a pen or operate my iPhone.   To this day I still can’t feed myself or drive my adapted vehicle.  As soon as I had a Fluoroscopy to see whether I had the strength to swallow food my Speech Therapist and Dietician put me onto a puree diet.  The first food I eat in over two months was pureed salmon and broccoli and mashed potato.  I chuckled that the chef had shaped the pureed salmon into the shape of a fish.

No matter how much physio and suctioning I had I just couldn’t clear my chest.  I was exhausted, depressed and desperate to go home.  When I eventually left hospital I recuperated in Somerset.

I wanted to get back to ‘normal’ rather too quickly and so I arranged a phased return to work.  I installed speech recognition software on my laptop and Access to Work funding for transport.  Returning to work gave me structure and some purpose again.  However, I struggled physically and emotionally.  But I stuck at it.

Although I’m missing three months of 2010, this whole experience has had a profound impact on my life.  Inspired by coaching, I’m writing a seminar and book to help others learn from my insights.  Here’s a sample:

Fear

I faced the ultimate fear – Death!  Things I once feared feel less significant.  My mantra is “well, [this or that] isn’t as bad as being on life support!”  We’re born with just two fears: fear of falling and fear of loud noises.  Every other fear is something we’ve learnt.  Do these fears have a right to impede us?  We created them!

• Brainstorm all your fears.  Write a list as long as you can.  Write some more.
• Read through your fears aloud.  Listen intuitively to your body.  Do you become tense? Does your heart rate increase?  This is a good indicator of fear as discussed by Charles Darwin in his book The Expression of Emotion.
• Score each fear 0-10.  Where 0 fears have little impact on you, to 10 where you’re taken a long way outside your comfort zone.
• Categorise your fears into ‘comfort zones’.  For example, fears scored 6 or less you can cope reasonably well with.  Scores 7-8 are uncomfortable.  Fears scored 9 or 10 panic you.  You decide your thresholds.
• What do your high scoring fears tell you?  What patterns can you see?
• Tackle your highest scoring fears first.   As Brian Tracy says begin by eating the ugliest frog first.
• What’s the worst that can happen?  If this fear comes true, what could you do to make the situation better?  Are you really not in control of the situation?  How can you regain control?

Priorities – what’s important?

Before the coma I was a busy man!  Lying in hospital with no responsibilities I asked myself: “What is it that’s really important to me?”  I was spending time on some things that demanded more of me than I got in return.  What’s your return on investment in the things you do?

• Write down everything you’re doing in your life – for yourself, work, spouse and family – everything.
• Cross through everything you do because you feel you ‘should’ be doing it or someone might be disappointed if you didn’t do it.  How much have you crossed out?
• Put a star next to the things you want to do and enjoy doing.  If you aren’t doing the things you crossed out, what would you do more of or start doing?

According to Stephen Covey’s Time Management Matrix we should spend our time working at the things that are Important but Not Urgent – the quadrant of quality and personal leadership.  But most of us spend our time working at things that are Important but Urgent in nature – the quadrant of necessity.

How can you avoid activities in Quadrants III and IV?  How can you do more of Quadrant II?  How can you reduce efforts in Quadrant I so you have more time for Quadrant II?

Family and Friends

I’m fortunate to have a loving family and great circle of friends.  Families are important:

• They are our first school after entering the world – we learn of love and shared experiences;
• Family shape our personality and life as an individual;
• Family is somewhere where we’re accepted without demanding much;

Think of the relationships you hold dear.  How can you nurture these relationships?  What one small gesture could you do right now to let someone know that you care about them?  Actions speak louder than words.  Do you hold any grudges?  How helpful are these grudges?

Despite having a pretty horrific illness I’ve gained a lot of positive insights from my experience, which I’m glad to share with you.  Confucius once said “the gem cannot be polished without friction, nor man perfected without trials” and one should “Never, never, never give up” – Winston Churchill.

In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.

For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.

So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.

It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?

If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life.

Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.

So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.

What do you think to this and various other recent government announcements?