Wheely Hard …But We Won!

I got my wheelchair!

I went on Thursday to collect it from Preston mobility hospital.

It has been such an awful stressful journey trying to get a suitable wheelchair to use .

I got sick and when i became unable to walk I purchased a mobility scooter.

I wanted to be more active but also more sociable by being in a wheelchair. So I went to the doctors and asked for an assessment.

It was all rather strange as he filled a form in and I recieved a manual wheelchair that was ridiculously heavy to push and completely unsuitable for the terrain around me.

I contacted the wheelchair centre and explained this to them and they said they had one other wheelchair they could send but if that wasn’t right then my only option would be was to have a voucher that would cover approx £350 towards whatever chair wanted but I had to pay the rest.

My options at that point seemed to be to have this second chair and put up with it regardless as anyone who knows the costs of wheelchairs knows that £350 wouldn’t go far in paying for a lightweight substantial chair.

The second chair came. An invacare action foldable manual. Yes it definitely was better than the first. It still wasn’t suitable for the area i live in . It still was an awkward thing to push and be pushed. Plus it was too small for me . The seat belt never fit.

During this time I was so desperate for support to get some form of decent transport. My mobility scooter had broken and I was stuck ìn the house getting more depressed as I couldn’t push myself using this new chair.

I finally started getting some social support from the #nhs #enhancedprimarycare team . It was great to start finally getting support. It started off rocky as the first person kept cancelling or not turning up. The second lady was really nice and was going to help me learn how to go on buses ( if i ever got sorted with transport ) . I’d started going to the gym . Had my long term goal of getting as fit as I could for my kids.

I still have this problem of being isolated . I want to be able to take my children out like any other parent. The feeling of being restricted is horrible. Your choices taken away from you. You are always depending on others to do things for you.

My attention turned to grants that might be available. I spoke to turn 2 us and they said there are grants but you need a health professional to apply on your behalf. I forwarded them to my support worker. But I got told from her manager,

It was a waste of time you

applying as people with

no legs can’t even get them

or people with cerebral

palsy. We can but you’ll be

wasting your time!!”

My response was basically if you as a manager and my support worker have that attitude then don’t come to my house again as I don’t need that sort of support.

I think reading between the lines I’ve been quite vocal about the lack of support and resources in this area for young carers and their families. I’ve been asking for help on a personal level and also to try to get a group in this area started as there’s nothing. It’s a very small community here so I’m guessing I’ve offended someone or whatever but children are being let down badly and I don’t want families to go through what we have been through/still are going through but the challenges change.

I was looking on line about wheelchair assessment policies and found this https://www.lancsteachinghospitals.nhs.uk/wheelchair-service

I’d never had an assessment done. I’d never been asked about my needs or my health . No measurements were ever taken.

I’m not asking for a second home , a company car , money back for meals out at tax payers expense . I was asking for a substitute for my legs . To bring a smile to my kids faces so that their mum could go out with them and be a better mum .

I wrote a blog and sure enough I did end up getting an assessment and on Thursday i picked up my wheelchair.

I cried my eyes out when i sat in it and felt the difference between my old one and my new.

It’s so much better. The only negative is folding size . The new one isn’t as compact.

My husband noticed a difference when pushing too. The other he struggled to manoeuvre yet the #primaryenhancedsupport services manager suggested that my children push me around. I responded that I’d get a health a safety assessment done first please!!!(Im a curvaceous momma and my kids are 8 ,10, 12 and 15 well the ones at home to help .The 15 year olds shoulder keeps dislocating but she’s had problems for a long time so I’m hardly gonna ask her).

Anyway my new wheelchair . I’m pretty sure I will get stronger and go further the more I use it. The point is that it’s useable. It’s great . I’m so happy.

Being a rigid frame one i can also get attatchments that will fit onto the wheelchair which will make it multi use for anything.

For example:

Free wheel so that you can go on all terrain ground. A walk in the country, by the river or very useful if you live in an are full of pottholes or pavements that aren’t lowered where they should be. Ideal for camping.

A handcycle attachment that fits to the front of your wheelchair so you can just ride . Good exercise for your heart and lungs and a great way to go out with the children.

Probably my favourite and of course the most expensive. If you are going on a long journey, this effectively turns your wheelchair into a scooter. I’m not sure of the measurements but I reckon you could get on the train with this . It just looks super practical.

Of course all these accessories you have to buy yourself. The things most people take for granted that are free to enjoy come at a cost for us.

If you are lucky enough to afford it fantastic but what if you can’t?

To get me out of the house my friend encouraged me to help out with the local beaver group. I enjoyed it but the problem was I couldn’t go out of the hall or do any of the activities off site as I didn’t have suitable mobility equipment I felt useless sat like a spare part.

I can’t take my children to school or out very far as I don’t have suitable mobility equipment.

My husband supports me but also works weekends and evenings. So we are limited as to what we can do.

So those tears I cried on Thursday were tears of happiness that I finally got a wheelchair that I can work with. That there’s accessories one day I may be lucky enough somehow to get.

There were also tears of fustration that so many people are struggling. So many people have to go through this. They are isolated in their homes.

The government was supposed to be working to improve the situation but there’s not much point in providing any other service if a person hasn’t got the basic equipment to function as any other person.

Referring them to mental health how much does that cost ? Getting someone to come round and say I’ll help you get on a bus when you get sorted with wheels ,how much does that cost? The cost of paying charities to look after young carers but doing nothing really ?

Wouldn’t it be better to put the money into equipment , don’t you think spending time living and as a family would be the best therapy?

I know what I’d prefer …..

If you need a wheelchair insist on an assessment, don’t give up.

Joanne Quinnell

Ps

If anyone can share any tips links stories of their stories it would be fantastic to hear.

If anyone knows of any grants available that could be accessed for wheelchair attatchments I’d really appreciate that .

Carers week my thoughts ,not holding back ………

It’s great to see blackpool carers and young carers representing what it’s like to live in the roles they do and raise issues in parliament . It’s also so fantastic to see all the support that they are getting from MPs radio stations and lots of charities.

It’s so disappointing that for carers week Barnardos the organisation that is supposed to be supporting Fleetwood Wyre and Fylde launched a fashion magazine.

It’s disappointing that we have no support from our local MP or local people or businesses . The activities planned for young carers in Fleetwood Wyre and Fylde for this week I’m sorry to say are

I’m feel bad and another mum and myself are trying to change it but we really need help.

These kids are important. These kids are missing out . These kids deserve support and a childhood that circumstance has robbed them of.

Nobody seems to care about young carers in Fleetwood Wyre and Fylde or socially isolated families .

Please can someone help this is so wrong.

If we can organise regular events at places once a month say each month. Get enough local companies to offer their services once a month ,then maybe we can get a time table together.

It’s going to need volunteers and community spirit to get it going though. If we don’t believe in these children, who will. They are already in places that there isn’t much to do.

I’m not asking for money, I’m asking for a little time, time and investment into the future of the next generation who are ultimately going to be damaged if they don’t get support and interaction like children should.

Joanne Quinnell

Who’s that Stranger

Who is that person staring at me ?

Her hair’s a mess it’s pink and green.

Her face is flushed , her eyes are weary.

Her arm shakes a lot and she’s incredibly teary.

She has memory problems she forgets to breathe !

And some days it slips her mind, how to write and read.

Im not frightened of her, I’d easy get away,

Her legs are all so shaky they spasm and sway!

I do feel sorry for her as she’s a prisoner in her home.

Really frustrating, when at one time she was active, loved to roam.

When she got ill people said they would help most offers were fruitless,

I suppose as it wasn’t their life they were too busy so didn’t careless.

A burden to everyone is how she felt,

Her husband kept saying it’s just the cards they were dealt.

No matter how hard she tried …….

She was sad every night she’d bury her head and violently cried.

Who is that stranger who’s now looking at me?

There are a few things in common that we have I do see.

No dear God please tell me that’s not who I think it may be!

Our eyes meet, a few things I recognise;

Like the scar just above my left eye.

I got that scar when i was climbing a hill,

My life was full of adventure my passion was finding that next thrill.

Then bang the adventure stopped along with my heart,

My husband and family still keep trying to give it a kick start.

I’m not me I don’t know who I am!

I try to move my foot and get twitches in my hand.

I do Keep on trying hard to find a way to fit back in.

But my arms can’t push this wheelchair, it’s a useless heavy thing.

I try to walk but my legs give way,

Unable to breathe I fall to the floor and in silence I lay.

Trapped inside, my house,my head and this body a prisoner tormented for another day.

Who’s this person laying on the floor?

Errm I can’t remember but I once knew her I don’t anymore.

Joanne Quinnell

Sometimes we lose ourselves when we become ill as it stops us from living our lives the way we are used to living it.

Social isolation is so hard and change is needed to support people to be able to get out of their house and enjoy their life the best way they can.

Mobility equipment needs to be provided so we don’t become prisoners in our homes.