Scope would like to know about experiences of looking after children with disabilities - please complete a survey

[AnnMumsnet]

We are working with the disability charity Scope and want to find UK Mumsnetters who have a child / children under the age of 18 with a longstanding physical, developmental or mental impairment, illness or condition to complete their survey.
By ‘longstanding’ they mean anything that has affected your child or children over a period of at least 12 months or that is likely to affect them over a period of at least 12 months.

They'd like to find out more about the support that is available to your family, and how that impacts on family life. All responses are anonymous.

There's no incentive for this one but responses will help Scope!

The survey link is here: www.surveymonkey.co.uk/r/DKN3F78

thanks and best wishes

cannot remember how many of these surveys I completed over the last couple of years. Nobody cares about the carer, nothing ever changes, in fact it gets harder and harder to access any kind of support.

Agree ginger. How much more evidence does any organisation need to have to show that being a carer places huge strain on your life.

I'm still a carer for my DD but because she's now 20 years old, apparently my experiences don't count or matter.

I'll still be her carer when she's 40. That is what "longstanding" means.

Agree with Ginger, nobody gives a damn about the carer.

The only time a professional will become involved is when you're in total crisis and by then its often too late.

Have filled in the survey anyway, I hope something comes of it.

DS is 19 today. What a hard, lonely and suicidal existance being a Carer has been. Almost killed me. Sense have helped so much this year. I am almost a new Woman!

Nobody gives a shit about Carers.

Maybe this time the evidence will show that things have become even worse.

Maybe this time the evidence will show that things have become even worse

it has been well evidenced times and times again. What do you think will be different this time???

I care for an autistic child and struggle to cope with anger outbursts, I have spoke with go about this ho referred to Camhs but referral refused as all evidence is anecdotal I am desperate for some help and feel we are slipping into crisis.

When I contacted Scope for information and signposting they were useless, I fed back to this effect and received no response. I'm really not confident that they'll do anything useful with any further feedback from me.

After 18 no one cares! My son is 32 and he hasn’t had any input since he was 18. We never had respite ever and I think it was because they could see we could manage!
My son falls between adult mental health and physical health teams and so hasn’t even got a social worker.

10 year old DC with severe ASD and learning diffs. I work school.hours. no support network. I am on my knees. the only advice my GP and SS had for me was to give up my job - unfortunately we would not be able to keep a roof over our head on the pittance aka CA. So I keep working. and as I am able hold down a job we are deemed not in need of support. I am close to running out of steam and hitting the ground. this bill will dwarf what would have been 2-4 hours of desperately needed respite per week. not to mention the human cost.

I had to quit my job to become a full time carer for my children. 12 seems to process a carers allowance claim. Will never be able to claw bAck out of the debt that caused. I’m sick of struggling with money.

I rang Scope to ask about respite, they said that Scope had moved away from directly providing services to focus on influencing policy and promoting change.
Who the fuck is rolling up their sleeves to help carers and people with CP with their current, immediate needs? More fucking talking and “lobbying”; shiny grads polishing their transferable communications and PR skills on the growing NFP bandwagon. God forbid they take on the risks and costs of actually plugging gaps in the money and skills deprived areas of provision.
I was going to leave money to Scope in my will but I won’t be now.

@LightDrizzle similar. I only wanted information on counselling for my DD with CP, I was going to pay doe it myself, and they were able to give me zero information, zero signposting, nothing, just waffle about policy.

Yep got to agree. DD almost 37 and no-one gives a damn once they leave school at 18. I’m ‘lucky’ though eye-roll I have a VERY supportive ex husband (dd’s dad ) and an equally supportive husband.

I have a Direct Debit set up for Scope, i had no idea that their role had changed.

I chose them because as well as providing direct care, they were politically active and Mencap (who is similar) had a lot of support, already.

My experience of my DD turning 19, is that the EHCP plans are hard to get and without that, we have had to fund my DD to do her level 2 Professional Cookery. She can't pass the approved Level 2 Courses, which would get her funding, because of her LD's, she also has other issues.

The future for those with LDs is becoming really scary.

I suspect a lot of these charities are just make work schemes designed to keep themselves in employment. How many of them actually do anything. It’s all very vague

Done, unfortunately I agree with PP about how carers are treated and how things never seem to change for the better. Always worth trying though

I have a 17 year old dd whom im the carer for and fed up of all these surveys we get asked to do. Over the last 2 years my mental health has gone down hill and no one cares about the carer. Having cbt and on meds. No respite no life just my usual daily routine...urgh

That is a really badly written survey. When the questions aren’t leading they entirely miss the point. I hope someone from Scope is reading this thread. You do not need to survey parents of disabled children. All this information exists. Respect the people you are supposed to be representing and don’t waste their time.

That is a terrible survey. What in earth is it supposed to achieve? I'm embarrassed for Scope and I used to be a huge fan. My daughter has cerebral palsy and Scope had a lot of very useful information years ago. I used their forum, and also their information line, as I was concerned that our paediatrician had written a factually incorrect letter to us regarding dd's condition and I was alarmed that someone who who was so bereft of knowledge about the condition was responsible for her care.
This survey is abysmal. I have no idea who put it together, but can I respectfully request that they get some research training, please. To put this claptrap out is to essentially minimise the importance of carer engagement, and proves that parental opinion is barely worth the effort of collecting. What a half-arsed job.

My DS has a rare genetic mutation. He's 7 but functions at 18-24 mths.
I'm one of the lucky ones as we had a local opportunity group were wonderful people have Thier time for free once a week for 2 hours.
I met with parents just like me and I got 2 hours if my life back. I sat and ate biscuits and drank coffee and we discussed what care was available and benefits and things which had helped the more experienced. I made AMAZING life long friends.
Now when I'm stressed I pick up the phone to one of them and we have s giggle about how shit it all is!
We also have an awesome School with a head who knows how to run a special needs School.
I run the PTA with the friend I spoke about earlier. My child will be at this school until he is 19!!!
We get no respite care and our social worker is shit!!!!
My eldest is 10 and has HF ASD and my DH has MS. All 3 kids are severely hypermobile as am I.... I gave up my life and career to care for my son ...in exchange for £60 per week.
Currently having DSs sleeping meds cut as paediatrician has decided after 4 years they are dangerous... So I have my DS in bed with me and my DH is sleeping in the sofa!!!! Fir Christmas we are asking for money for a super king size bed .. . So we can all sleep better ! Sex life ?? Ha ha ha !!!
Unless you live it...no one will truly understand the hell of living with a severly disabled child.
Then you go on Mumsnet and find women talking about surgery cause they don't wanna push Thier human out of Thier vagina and you want to strangle them!!!
That's life .... And Mumsnet life !

My child meets the criteria for respite but his needs are deemed to severe for the staff who do respite, to manage, so he doesn't actually get any. I am of course expected to manage it on my own.
That's the sort of 'support' there is.

And yes that survey is terrible.

I agree, rubbish survey, as if the answers weren’t already widely available. I have a child with CP and SCOPE is useless. There is now no CP support charity at all.