Tag Archives: helpline

2016: a year in the life of the Scope helpline

In 2016,  the Scope helpline responded to nearly 20,000 requests for information and support by telephone, email and via Scope’s online community and social media networks. We also supplied answers to over one million requests for help and information via our website.

Your top 5 issues in 2016

Apart from wanting to know more about Scope, the top issues people contacted us about were:

  • Benefits and finance
  • Independent living
  • Social care and services
  • Transport
  • Employment

Funding the extra costs of disability

Unsurprisingly, the number one topic you ask about is benefits. To respond to this, we’ve employed an extra benefits and finance specialist  on the team.

To complement the work of our specialist advisors, our partnership with the charity Turn 2 Us offers an online benefits calculator and grants search tool. Since its launch in July 2015, thousands of you have used this free service to improve your finances, completing 8,100 benefits calculations and over 7,200 grants searches.

In 2016 so far, the calculations have identified over £319,000 per week in unclaimed benefits. This can make a massive difference to the lives of disabled people and their families, as this customer explains:

“Thanks to your brilliant advice, I have had some fantastic news. I applied for Attendance Allowance with the form on your website and I have been awarded £55.10 per week which will certainly be a big help to us. Thank you.”

We love it when we hear stories like this. Another customer contacted us following his failed application for Employment Support Allowance (ESA). Our benefits specialist provided supporting information so that he could conduct his entire appeal himself. He went through two tribunals and finally, after spending a winter without heating and using food banks, he eventually won. He received a backdated payment of more than £5,000 as well ongoing ESA payments to support him to live.

Just the job!

Another caller who was out of work applied for a job at a company signed up to the Government’s positive about disability scheme. He met the essential criteria but had received a standard rejection letter so he thought he’d been discriminated against. We spoke to him about how to challenge the decision. The company reviewed his application and admitted a mistake had been made and he did indeed meet all of the essential criteria. They offered him an interview and he got the job!

Our online community

As well as answering calls and emails, Scope helpline continues to play an active role in our ever-growing online community. We are investing more time in answering your questions online because we know that answers to one person’s query can help many others too. For example, one discussion has had over 12,000 unique page views, meaning that many more people are continuing to benefit from our expertise and advice.

New information products

As well as responding to a wide range of enquiries, we have also produced lots of new online information in response to popular demand:

  • Technology in association with Abilitynet
  • Equipment with Which? (coming soon)
  • Independent living, updated by our new specialist in social care.

In 2017, we will continue to trial new ways to deliver information content with pilot videos on PIP assessments, PIP appeals and employing your own PA.

We’ll also be launching a new information product that will help guide people new to disability, like this caller to our helpline:

“After working within the corporate industry for over 20 years, I have recently become disabled and found the past 9-10 months totally life-changing. I’ve called various places and not received the help or level of service I have just been provided. I don’t usually do this but I really want to make a point to applaud the level of service and professionalism your helpline has. I felt as though I have been treated with dignity and pride, and not made to feel uncomfortable talking about my disability. So thank you again.”

Goodbye to Veronica

2016 also saw the retirement of helpline manager Veronica Lynch who has worked on Scope’s national helpline since it launched in 1990. She retired in April after 26 years’ dedicated service and won a national award for staff with a long-term commitment to their cause and who had made a positive impact to people’s lives.

We miss her but, more importantly, so will the people who have asked for her support over the years.

One parent, whose twins have cerebral palsy, said:

“I can honestly say that I don’t think I could have coped had it not been for Veronica and the helpline. They have given me so much time and support through all my difficulties and battles.”

Have a happy Christmas and New Year!

Thank you to everyone who has contacted us in 2016 and may we wish you all a Happy New Year.

For free, independent and impartial information and support on the issues that matter to disabled people and their families, contact Scope helpline on 0808 800 3333 or helpline@scope.org.uk

Please note Scope’s helpline is closed 24 December to 28 December, and between 31 December and 2 January. 

Scope helpline receives no Government support: £12 can help pay for a call to the helpline this Christmas. Please support us if you can.

 

I wasn’t told I had cerebral palsy till I was 60 – Paula’s story

Guest blog from Paula, who contacted our helpline earlier this year after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support. Here she shares her experience.

In January 2015, soon after my mother died, my sister called me and told me there was something she needed to tell me – that I have mild cerebral palsy, and that my mother had never told me. I am 60 years old, and I had known nothing about it until then.

I went to my GP and asked him to read me the medical notes from my birth. Sure enough, there it was.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Attitudes were very different then.

Paula, touching a tree in a garden
Paula today, photographed by her husband of 40 years, Graham

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem  and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Paula, with her baby son
Paula with her son

Life today

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask.

Paula, as a young woman, smiling for the camera
Paula as a young woman

I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling. I just wish I had known sooner about my condition, and I very much hope this wouldn’t happen today.

Attitudes to disability have changed since Paula was young, but did you know that until 1995, it was still legal to discriminate against disabled people? Read more about our work to mark 20 years since the Disability Discrimination Act.

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

2014: a year in the life of Scope’s helpline

In 2014, Scope’s helpline received thousands of telephone calls and emails and responded to a huge variety of posts on Scope’s online community and social media networks. People talked about all sorts of things relating to disability, from housing to Motability, from recycling disability equipment to taking part in sport. When we add in the unique views of our information on the Scope website, all in all we reached over half a million people.

We thoroughly enjoyed hearing the reactions to the End the Awkward campaign and Strip for Scope. Thank you to all of you who got in touch with us, we enjoyed sharing your feedback.

We launched a revised version of the Parent Information Guide aimed at parents of young and newly diagnosed children and we have also been busy writing information products. Check out the Scope website for the following new information:

Training

It’s really important that we keep up with all the changes that are happening in the disability field so we’ve been on several training courses. We’ve attended training on changes to the Welfare system including Universal Credit and PIP and we’ve learned more about Healthcare Budgets, Direct Payments, Housing, Community Care and special educational needs. One member of the team attended a two-day training session all about sleep.

Places we’ve been

Occasionally we manage to get out of the office and meet people face to face. We’ve visited some DIAL advisory groups and had a stand at Kidz in the Middle exhibition in Coventry, the UK’s largest exhibition for parents of disabled children and professionals. We were present at the SEN and Disabilities Conference at the Royal Society of Medicine and visited the Royal Bank of Scotland HQ. And we managed to get out to some Sure Start Centres.

The team

Each member of the helpline team has a specialism aligned to one of Scope’s strategic themes. As well as getting general information on all aspects of living with a disability, you can speak to us in detail about:

We also managed to fit in an office move with little disruption to the service, thanks to everyone’s hard work. And we’ve just recruited an extra team member.

The enquiries we receive on the helpline really help Scope to understand the issues that people are facing. This means that (with your permission) we can inform our colleagues what you are telling us and they can use that information to decide what campaigns or policy work we need to do. Your calls about the delays to PIP were very helpful. We collected evidence and sent it to the Department for Work and Pensions to highlight the various problems claimants were experiencing. Your calls also contributed to the work we are doing with our Extra Costs Commission. We’re always looking for stories and case studies to put forward to our stories team to raise awareness of the issues affecting the people contacting us. All of this work continues and we are excited about the new challenges ahead in 2015.

So we’ve been extremely busy supporting disabled people and parents with disabled children and we’re really looking forward to the year ahead. Thank you to everyone who has contacted us in 2014 and may we wish you all a very Happy New Year.

For free, independent and impartial emotional support or disability advice, contact Scope’s free helpline on 0808 800 3333  or helpline@scope.org.uk. You can also talk to others online.

Scope’s 2014 highlights

2014 has been a really exciting year for Scope – full of awkward, nostalgic, sexy and some just Breaking Bad moments. We’ve rounded up a selection of just a few of the most memorable. Let’s hope 2015 is just as eventful!

Name change

We celebrated 20 years since we changed our name
from The Spastics Society to Scope, with a Parliamentary reception. We also looked at how life has changed for disabled people in that time.

The extra costs of disability

The Price is Wrong game show bannerCan an adapted BMX for a disabled child really cost four times the amount of the average child’s bike? Well yes, it can – and that kind of shocking fact is why you all got so involved with our Price is Wrong campaign and 550 challenge, to raise awareness of the extra costs that disabled people and their families face for everyday items.

Top films

Man bending over to talk to a wheelchair userOur End the Awkward adverts featuring Alex Brooker got almost 10 million views! They helped us to raise awareness of the fact that 2/3 people feel awkward when talking to a disabled person, mostly because they don’t want to offend or are scared of coming across as patronising. But we can all get over it!

Disabled model taking off his clothes in Scope charity shopThis year, our Strip for Scope film shocked everyone with a cheeky play on the sexy Levi’s Launderette advert, featuring disabled model, Jack Eyers. It was our most successful stock campaign –  we received over 1.2 million donated items to our shops.

We also created a film featuring disabled people talking about what the social model of disability means to them, the confidence and liberation it gives them – and how it can encourage everyone to think differently about what an inclusive society really looks like.

Face 2 Face befrienders

Two parents talking in a kitchen over a cup of teaWe were delighted to open new Face 2 Face befriending services in Oxford, Coventry, Lewisham, and three London locations – Islington, Waltham Forest and Redbridge, and Newham and Tower Hamlets. It means loads more parents with disabled children can get the vital emotional support they need, so they don’t feel like they have to cope alone.

Support and information

Our helpline staff have expanded on their lead roles in specialist areas, so they can give more thorough advice to people who need it, and share their knowledge within the team. The areas cover cerebral palsy, social care, welfare benefits, finance and housing, disability equipment and provision, early years, employment, and special educational needs. We also launched a new online community to reach even more people.

Get on your bike

Not only did over 4,000 people take up an events challenge for Scope this year, but we were thrilled to find out that we’ll be the official charity partner of the Prudential RideLondon–Surrey 100 for 2015. It’s worth a whopping £315,000 to Scope and means we have over 600 places for Scope participants.

New friendsRJ Mitte posing for a photo with a young disabled girl in wheelchair

And last but not least, we were very chuffed to welcome RJ Mitte, aka Walt Junior from the hit US drama Breaking Bad to Scope. He has cerebral palsy, but he’s never let it hold him back. He spoke to some young disabled people who are currently on our employment course, First Impressions, First Experiences, to tell them how he started his career.

What have we missed? If you’re part of Scope – what have been the highlights of your year?

I was 21, a new mum, and terrified about the future: #100days100stories

We first shared Dionne’s story and film in August 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories project. 

Dionne was in her first year at university in London when she became pregnant with Jayden, now aged seven. He has cerebral palsy, epilepsy and global development delays and isn’t able to walk, talk or sit up.

“I had no problems during the pregnancy, the problems started during labour,” Dionne says. “Jayden stopped breathing and had to be resuscitated at birth. He had seizures when he was just a day old and ended up in the special care unit. Doctors had no idea what was wrong with him.”

“I just had to get on with it”

Dionne had planned to go back to university to finish her degree, but Jayden’s care needs and many hospital appointments ma de that impossible.

She also faced a huge struggle getting any support for Jayden. He was born in one London borough but the family lived in a different one, so neither council wanted to take responsibility – and in any case, services were overstretched. Dionne and Jayden were living alone in a mother and baby unit, with no outside support.

“For the first three years of Jayden’s life we had nothing. No equipment at home, no physiotherapy other than a sheet of paper with instructions, and no real support. Everyone was talking but most people were not doing. I had so much hope in care services but time after time I was let down.

“I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. We were both exhausted. I was always on standby for something to go wrong with my son and I hated feeling helpless. I was very critical of myself, and so were the people around me.”

“I go back time and time again”

Dionne originally contacted the Scope Helpline for advice about physiotherapy. She was put in touch with Vasu, a Scope regional response worker, who visited her at home to discuss the kind of support she needed.

Since then, they have worked together to tackle a huge range of issues relating to Jayden’s care, health and education. Vasu wrote to social services pushing them to take notice of Dionne’s case, and this led to Jayden finally being offered a physiotherapist.

Dionne says: “Vasu has sent me so much information about sources of funding and the latest treatments for cerebral palsy. He emails me application forms and sends them in the post as well just to make sure I receive them! He rings me unprompted to give me advice and see how I am. He’s even offered to send job opportunities my way.”

RS3249_DSC_0014Vasu also introduced Dionne to a solicitor to pursue a successful negligence
case against the hospital where Jayden was born, which will be a huge help in providing for his needs in the future.

“Out of all the organisations I’ve been to, Scope’s the only one that’s stuck,” Dionne says. “It’s an organisation I go to time and time again because things actually get done.

“Jayden is so aware and so intelligent. No matter what he goes through, even a seizure, he still has a smile for me. He just needs decent support so he can gain the independence he craves. I want Jayden to enjoy being a child, without restrictions, and I want to enjoy being a mum.”

Today is Time to Talk Day, which asks everyone to take five minutes to talk about mental health.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

 

5 top tips for dealing with Christmas debt

And so begins another year. Welcome to 2014 from us here at the Scope helpline. May this year be a good one for all. Last year we saw savage cuts to the welfare state leaving our most vulnerable members of society in deep distress, anxious about their futures.

We have heard some shocking stories about how people are coping with the cuts and the challenges they’ve faced to get through each day on budgets stretched to the limit.

We wanted to turn our attention to the help available if you’re struggling with debt. At this time of year after the Christmas festivities have ended, we often look to our finances and realise that we’ve spent far too much money and have to pay it back and try to get through another year.

Here are the helpline’s top tips to help you get back on track for 2014.

1. Prioritise your outgoings

Your priority outgoings are rent/mortgage, Council Tax, utility bills and court fines. You should pay these bills first. If you are having difficulty with any of the above, please call us free on 0808 800 3333 and speak to one of our response workers or email response@scope.org.ukDon’t avoid dealing with these issues as they will get worse if left.

 2. Maximise your income

Are you getting all of the benefits you are entitled to? Try a benefits check with Turn2us – they may also be able to help you apply for other financial help.

3. Are you struggling with debt?

There are various sources of help available to help you manage your finances. You can seek help from charities such as Step Change, Money Advice Service and National Debtline. Do not pay for financial advice. There are plenty of advice agencies around who offer free advice. Avoid payday lenders who charge excessive amounts of interest and avoid debt consolidation without getting advice about this first. You can access money advice at your local Citizen’s Advice Bureau, approach your local credit union and, in some areas, your local council.

4. Emergency help

If you find that you have no money for essential bills you can apply to your local council for welfare provision payments which replaced community care grants and crisis loans in April 2013. The Children’s Society has created an online database of services in your local area. Every scheme has different criteria but would usually be considered as a last resort.

5. Fuel costs

See the pages on our website to help you tackle your fuel bills and get help to reduce large utility arrears bills – see Scope’s information on helping with fuel costs.

Groups offering emotional and practical support

This is the first of a series of occasional blogs from the Scope Helpline so we would welcome any suggestions as to what info you would find useful, what you want to know about the Helpline and Scope.

Although we are the national helpline for Scope and the first point of contact for most enquiries, we are quite small. We have two new staff starting in September which will take us up to seven staff and we deal with an average of 1,200 phone calls and 400 email/website enquiries per month.

The Helpline is central to information production within Scope so if there is a disability-related issue that you feel we should have further information on, please let us know. We cannot promise but all sensible suggestions will be considered.

We have noticed an increase in the number of people looking for emotional and practical support from people in similar situations. It’s not just adults – many disabled teenagers who are struggling to come to terms with their impairment, feel that they could benefit from a mentoring or befriending service and being in touch with disabled role models. At Scope we have a number of exciting peer support projects that people can get involved with:

  • For parents of disabled children we run a network of support groups called Face 2 Face.
  • Young disabled people between 10 and 18 years old can join the Trendsetter’s group.
  • Over 50s in Wakefield can join the Our Generation service that offers one-to-one support for disabled people and people with long-term health conditions.
  • Everyone can get involved in the Scope Forum and talk to others online.

We’d love to hear what other peer support projects you would recommend, and let us know what areas you would like to see us talk about using the comments section below.