This commitment is even more inspiring given that Anna, who has cerebral palsy, needs a powered wheelchair to provide her with independent mobility.  Her previous power chair, provided through local contacts would break down frequently, often leaving her stuck for several hours until her parents could arrange to pick her up. In March, Priority, working with Newlife funded a new powered wheelchair that will provide Anna with the independence she needs to get on with her life.

The new wheelchair is slimmer and better fitted to Anna. “It’s letting me do what I want to do and now I can chase the children at school!”

This September Anna is due to start her degree course in teacher training at Canterbury University and is very excited about going. However her local authority has still not confirmed that they will fund the carer that she obviously needs to be away from home and live independently. As her Mother says “the fraught experience of trying to establish how Anna can access support at university has served to show huge gaps between what the government promotes and how that is delivered at any local level.” Despite this Anna is confident that things will work out, but seems calmly resigned to the fact that there will always be a struggle when it comes to accessing the correct support that she needs.

This reaction comes from many frustrating experiences. At 4 years old, when applying for a wheelchair from the local authority, her mother was told “but she’s terribly young, does she really need one?”. Later, after an application for a wheelchair had been with the local authority for 18 months, they were told it had been ‘lost’.

More recently, when deciding which university to attend, Anna came away from one feeling that she just wasn’t welcome. They told me the course was “very stressful, obviously trying to put me off”. Canterbury however seems to be different, with good facilities to support Anna’s needs. But this simply highlights the different levels of service provision around the UK.

Anna’s mother expects this to continue: “Children’s services, despite all their own weaknesses, do at least have the impetus of statutory requirements (children have to go to school, must be cared for etc). Once you come under the ‘Transition’ team it seems you become a whole different ‘problem”.

The new wheelchair is allowing Anna to look to the future. Her Mother is delighted:

“Your donation, via Newlife, has made a real difference to us and the wheelchair makes it possible, in the vital, practical sense, for Anna to achieve her ambitions.”

It also meant that Anna could to go to this summer’s Glastonbury festival, where she saw many of her favourite bands, including Stevie Wonder. Fortunately the good weather meant there was little of the infamous Glastonbury mud to get stuck in!

Once upon a time, disabled people lived in a small part of town known as medical model ville. With efforts to cure or keep disabled people away from society, one could say it wasn’t the best part of town. Gradually over time disabled activists and campaigners have spread the good word of social model ville. Here, ramps were invented, friendships forged and careers blossomed. Now, this move isn’t quite the end of our story because while social model ville offered improvement – not everyone could truly reach this place. The key to a disabled person living a fulfilled life is by having choice and control. If you cannot get out of bed when desired, how can you access that building, meet the love of your life or get that promotion. Progress was made towards the land far away, but storms would continue to trouble this journey.

It is seen more recently that the destination of ‘happy ever after’ can be reached through updating our systems and processes. In the past, social care was delivered by Government Local Authorities, who assessed a disabled person for their needs. They then commissioned what service was required to satisfy that need, as well as when it would take place and by whom. Thankfully this is now being recognised as an inefficient use of the lands resources. It is all good seeing a problem but in this land a solution is required too.

Out of nowhere a knight on a white horse appears on the horizon. Their name is ‘personalisation’ and their aim is take all the rules that have existed and turn them upside down. The knight is not a threat to other knights with other agendas; Personalisation knows his groundbreaking views will allow the beautiful landscape and opportunities that exist to be enjoyed by everyone. So what is this dude on the horse really up to?

By letting the rulers of the land, known as the Government, to assess the person and hold the budgets, we begin as we were before. However instead of directing which of the merchants in the land (social care providers) should support disabled people, the money is given direct. allowing disabled people to make their own decisions. Simple yet effective! What the shining knight needs to explain very clearly and articulately is what this means for (the newly beheld) ‘consumers’ of the land and indeed the merchants too.

Firstly there are responsibilities and rules as a consumer. Despite the benefits of entering the land of purchasing power, in the district of empowerment, there are still dangers. When using direct payments, or being on an individual budget one essentially becomes an employer. The tools required to take this journey will be around market research, legal contracts, human resources, time management, diplomacy, tax returns and other financial skills. As more dare to take this route, these tools are vital to breeze through this neck of the woods.

Lastly for the merchants, who were established to fill gaps in the private market, they are approaching a twisting, turning, winding and unknown journey too. They used to fill a generic need in bulk and were able to rely on the rulers for regular income and finance. Moving forward they also need a new set of tools including – market research, marketing and communications, customer service and retention, adding value, new financing mechanics and the key skill is “innovation”.

If the newly appointed consumers and the established merchants can meander through this tricky course which has been carved out by the brave knight, the view will be astounding for all. The rest of the land can and should do many things to assist the journey. However it is the demand and supply of the personalisation agenda that needs to progress resulting in a happy ever after story.

Pablo was clinically diagnosed with infantile epilepsy at an early age and this has led to his severe developmental delay. He is unable to weight bear or walk without specialist equipment or assistance and because he has no speech, he communicates by making noises, eye pointing and touch.  Pablo is also prone to frequent and repeated infections due to a blood disorder.

To enable Pablo and his family to go out more and access parks and countryside, The Priority trust, working with Newlife, funded an all terrain buggy for Pablo in the summer of 2009. The buggy also provides him with the postural support and positioning he requires.

Pablo’s Mother says: “He’s happier and more content. You can see in his face and body language that he’s much more happy and confident outdoors, which he loves.”

His parents are extremely pleased with the buggy and the difference it is making for Pablo and the family. Pablo is now much less isolated. Before, with his wheelchair, he needed to be indoors or on flat surfaces. The buggy is much more manoeuvrable and allows him to interact better with his brothers, enjoy parks and be outside more. As a family, they’ve also been on holiday together and Pablo was able to join family walks in the countryside.

Pablo’s Father adds “Having the all terrain three wheeler has enabled Pablo to enjoy and be able to access places that otherwise would have been impossible…without this buggy he would have been isolated and unable to join in many of the family outings.

This buggy has allowed Pablo to have experiences and enjoyment that he would have totally missed otherwise.  We are so certain that many of these outings have brought him immense happiness

We cannot emphasize enough how much this equipment has made a difference in Pablo’s quality of life”.

In 2007 Amelia was diagnosed with Spinal Muscular Atrophy Type II. This neuromuscular condition affects people in different ways. Amelia was able to walk on her own until she was 18 months old, when her condition deteriorated and she now needs a wheelchair to move around independently.

In June 2009 Amelia was given her ‘Koala’ Permobil powered wheelchair, through the support of The Priority Trust. As soon as she received the chair, she worked out the controls and just got on with using it. She is now able to move around at home, move toys from room to room and push her doll in its pram.

Amelia goes to nursery several days each week and ‘walks’ there herself and interacts normally with her friends. Her Mum said “we were worried how she would get on at nursery, but she just went straight in and got on with it.” The riser facility allows her to sit at table height with her peers and take part in all activities. Later this year she’ll start full-time school and can’t wait! The ‘Koala’ will significantly improve her life experiences at this crucial developmental stage.

Her Mum adds “With her ‘Koala’ Amelia can play with her friends, choose where she wants to go and scare her parents by driving too quickly! The riser facility means that she can press the button at the pedestrian crossing, choose food in the supermarket and reach her toys.”

So I headed towards the M11 with radio and heater on. 10 minutes later I realised I was cold and my hands were going into that weak claw they do in winter. With the new car, the accelerator is a little tougher but also I can’t reach the heat. So I started to struggle to get above 20 mph going onto the motorway. People were flashing and beeping and I started to crap it.

1 hr left and nothing looked optimistic. So I pulled in on the hard shoulder to calm and think. I tried to set off and now 10mph is hard. Back to the hard shoulder I call mum. We decided I can’t risk it and called 999. The traffic officers arrived while mum, Dave, Robbie and Jamie head to meet me.

The officers were great – we fired the heater, I moved to the next junction and pulled into McDonald’s car park where they bought me a tea. I spoke with Alessandria who put a good positive spin on things. Then the cavalry arrived. Jamie said if I wanted a family reunion there are easier ways.  So with mum I managed to drive back for sky plus Gavin and Stacey.

Then this morning I headed for the dreaded hospital review. I had blood tests, x-rays, stethoscopes, nutritionists and physio. As mentioned I hadn’t had physio in a while and am scared of the physio terrorists. However this time she was very attractive and funny and alleviated the pain somewhat. So I have been discharged, told to rest for another week with new medicine, go back for more physio and monitor it. I would rather have had “u r fine now” but this is probably the best news. At least it’s not terrible news but I do need to kick this 100% before getting back to normality.

Thanks for the get well messages guys. The Xmas period better watch out providing I’m back…

The broader area I want to discuss is easier with the back story. Those who have read my blogs and know me personally will know 98% of the time I enjoy working full time at Scope, meet a friend or two of a week evening, like a dance in a club at a weekend as well as watching Tottenham and taking in the odd music concert and then of course travelling when I can. So understandably I am feeling frustrated at being stuck in.

I am even more annoyed as this goes back to 26^th October with my infamous sleep study. I left the study with the ok and come back in a year comment, but with antibiotics due to a slight chest infection. I was then off work for 2 weeks which is the longest time I have ever had off in my working life but a must in the situation. I have explained before how for me a normal cold goes on my chest, my cough is weaker due to the SMA and the mucus sits there and becomes infected. Having recovered and gone back to work for 2 weeks I caught a second cold and last Wednesday it went south. So I am on yet more antibiotics and struggling to shift this time.

I remain confident it will be ok but as always I have been thinking deeper on this and want to share the following. Nearly 5 years ago I had the usual scenario but it was the worst I have known and turned into pneumonia. It was the first time I was aware of my mortality and not to overdramatise – I was scared and it was touch and go. On returning to uni afterwards I had news one of my best friends who had SMA passed away from pneumonia. We were both in Coventry living in next door flats and had also attended the same school on the same bus. It knocked me sideways for multiple layered reasons. Big shout out to Paul!

I have come to the realisation that I am right to do all the things I do and grab life, but this bad early start to winter has shown me that I (as with everyone) must know my limits. Rather than stress about missing work (which I have been) and be totally frustrated I am stuck in not doing the things I love, I know I have to accept my impairment is limiting me right now. In doing so I hope it will enable me to get better quicker.

I know from talking to other disabled people there is such a will to be ‘normal’ but sometimes to the detriment of yourself. I feel the point of this blog is to say to disabled people that do not dwell on your impairment, get out there and do it but when it takes a hold and limits you listen to your body and take the steps necessary to get back to full fitness.