You can light up Christmas for a family like Jenny’s

Thousands of families are expected to turn to Scope for support this Christmas, which is why we’re asking you to donate to our Light up Christmas appeal. With your help we can be there for every family who contacts us.

Jenny found out her son Harry had cerebral palsy just before Christmas. She didn’t understand his condition or how to support him. Here she explains how calling the Scope Helpline was the moment everything changed and how vital your support will be to families like hers.

Two years ago, my son Harry – who was five years old at the time – was diagnosed with cerebral palsy.

Harry had been complaining of tiredness and pains in his legs. A physio told me he was a typical boy, being lazy. But I knew there was more to it.

Harry would also keep falling over, his feet turned inwards and there was other behaviour I couldn’t understand – he would have a meltdown if there was the slightest change in his routine.

Harry, playing with his toys

“I thought I’d broken my baby”

I had to fight to get an appointment with a consultant. When finally we saw him we talked for only a few minutes. He told us that Harry had cerebral palsy.

I asked, ‘what is it?’ and ‘how did it happen?’ He said I must have fallen during the pregnancy, scarring Harry’s brain . We left without any leaflets or explanations.

The information given to Jenny was incorrect. For help or information about disability please get in touch by phoning 0808 800 3333 or emailing helpline@scope.org.uk

Even though I knew I hadn’t fallen, I burst into tears. I thought I’d broken my baby.

When Christmas came, we were still in shock. Usually we’d spend the day with my mum, but instead we stayed at home on our own. It wasn’t nice.

We’d bought Harry a bike for Christmas and he didn’t want to go on it. Looking back now, I realise it wasn’t the right present, because of the pains in his legs. But we’d bought it before we understood what Harry was going through.

Calling Scope’s helpline

I’m so thankful I found Scope’s helpline number. Jackie – a Scope Information Support Worker with 17 years experience – called me back the same day.

Straight away, I realised I was talking to someone who understood. I could see a future, because Jackie could help me understand Harry’s needs and how to help him.

Ever since the day of that first emotional phone call, Jackie has been an amazing support. She understands cerebral palsy and she understands Harry. That’s invaluable to me.

With her help, we’ve adapted to Harry’s needs and so has everyone in his life. Harry is doing really well at school and we are starting to think ahead to when he moves on to secondary school.

It isn’t just Harry’s life that’s better, it’s the whole family’s. And this year, we’re really looking forward to Christmas!

Harry, celebrating Christmas with his mum

We want to be there for every single family that contacts our information and support services this Christmas.

Please give as generously as you can and light up Christmas – and the future – for a disabled child and their family.

Donate to our Light up Christmas Appeal today.

For help or information about disability please get in touch by phoning 0808 800 3333 or emailing helpline@scope.org.uk

“I can’t get out of bed, or get dressed, most days”

New research released by Scope today reveals the extent of the social care crisis for disabled people who need support to do the basic things in life. Here are three of their stories.

Robert, 63, from Warwickshire, has very restricted mobility following an accident 15 years ago. He isn’t able to get out of bed, get dressed or prepare food without support, and is in a lot of pain. He’s currently entitled to 14 hours support a week.

Robert, a disabled man in his 60s, in bed.

In an ideal world, my support worker would come for two hours a day, and he would shower me and change my bedding, vacuum my room and stuff. But if you have a week like I had last week, where I had three hospital appointments, all my social care is used up on getting me to hospital. There’s no time left for everyday care.

If I’m on my own, I don’t have anything to eat or drink all day. So life is miserable, to be honest.

I’m lucky that my wife lives with me, but she shouldn’t have to do everything for me, and without her there is no way I could live independently.

I rang up my local authority and told them I was under pressure – I couldn’t afford the water rates, and I was being taken to court. They sent me a letter telling me to get food from a food bank 17 miles away. I can’t get there, and I would rather starve myself to death than go to a food bank.

I can’t get to see my grandchildren. I’ve never visited my son’s house. I honestly can’t remember the last time I did something socially, out of the house – we’re talking years ago.

“I have to sleep in my wheelchair, and I am malnourished”

Rachel, 42, from Southampton, uses a power wheelchair and is in constant pain. Her mobility is very restricted, and some days she isn’t able to get out of bed.

Since 2010, I have had two thirds of my care package cut, from two and a half hours a day down to 45 minutes.

My social worker just said ‘We can’t do it any more, we have to make cutbacks’, and then my care was cut almost instantly. It just feels like they washed their hands of me.

On my worst days I can’t get undressed properly in the evenings, or transfer from my power wheelchair into bed, so I have to sleep in my chair, in my clothes. I had to fight to get a care call so I can shower once a day. My local authority suggested that three days a week would be enough.

It’s horrible. When my arms aren’t working properly, I can’t prepare meals, so I end up just having bread. Before, I would have had my meal prepared. The last time I was in hospital, they told me I was malnourished.

“I’m getting deeper into debt just paying for basic care”

Jo, 47, from Cambridgeshire, has spinal muscular atrophy. She arranges her own care, employing support workers using direct payments.

I’ve got very weak muscles all over, I use an electric wheelchair all day, and I need support doing most things really – washing, getting dressed, cutting up food, moving my arms about to help me do things.

I need to have carers come in three times a day, and I technically get enough funding for 28 hours care a week. But the rate we get hasn’t gone up for 15 years, and there is a shortfall in how much that 28 hours actually costs when all the extras come in – holiday pay, recruitment, pension contributions.Portrait of Jo, a disabled woman, sitting in her wheelchair

You end up cutting corners with the very basic things. I might end up not washing my hair, because it means I’d be keeping the carer here too long. It might take me three quarters of an hour to have a shower, but social services say ‘Well, actually you can do that in 15 minutes.’

We are actually in debt. I’ve had to take out personal loans. This has been going on a good five years. We never clear it, it increases slowly year by year, and it just feels like it will never end.

If I cut back on the amount of care I get, that would mean staying in bed in the morning, or not going to bed at night. It really is the very basics.

We’re calling on the Government to urgently address the social care funding crisis when future spending plans are announced by the Chancellor on 25 November.

Find out more on our website.