Tag Archives: Benefits

“I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up”

Our new report, Out in the cold, reveals the high costs many disabled people face for their energy. 

Over a third of disabled people say that their impairment or condition has an impact on their energy costs. Many disabled adults have worried about paying their energy bills, and many disabled households are living in fuel poverty. 

This follows our research published last week which found that on average, disabled people face extra costs of £570 a month related to their impairment or condition.  

Paying more for energy is something that Lynley knows all too well. When she became disabled her energy costs shot up. In this blog, Lynley talks about the impact this has had on her life.

Three year ago I suffered a sacral spinal fracture due to early-onset osteoporosis, which damaged nerves and has left me with permanent neurological pain.

Before I became disabled, I never gave the heating a thought. It wasn’t on very often, but things are different now. I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up. 

When you can’t move around, you feel the temperature much more and being cold affects my pain levels enormously. I have to wear extra layers of clothing to keep warm and I need the heating on constantly.

I also have an electric blanket for my bed and an electric heat pad which I use to help with my pain. I use electricity to charge my electric powerchair which I need to use to get around outside the house. This needs charging frequently so it’s another additional energy cost.

My bill is so much higher than before. Coupled with the loss of my income as a teacher, this has made ‘getting by’ very difficult. Personal Independence Payment (PIP) helps but there is very little money left over for anything else. I have to prioritise heating so that I’m not in pain.

Life is now very different

Since becoming disabled, my living standards have changed dramatically. I was a professional secondary school teacher in a large comprehensive and was managing five members of departmental staff. I had a large amount of disposable income and enjoyed a fairly busy social life. Things are now very different.

I’m unable to work and now try my best to manage on my benefits  and my small pension but it is very difficult sometimes. Energy costs take up a substantial portion of my income. It’s even harder where I live because we are unable to get mainstream gas and have to rely on oil central heating which is extremely expensive.

Any kind of social life is extremely difficult, holidays are a luxury and disposable income is now virtually non-existent.

What would help

It’s not fair that disabled people who need more energy and who might be on lower incomes  have to meet these extra costs themselves.  There should be more support and awareness. I haven’t received any form of financial help with my energy costs.

Benefits like PIP are there to supposedly fill the gap but it is insufficient to really make a difference. I would like to see a different energy tariff applied if there is a disabled person within the home, much the same as the council tax rebate we are eligible for.

That would make a big difference to my quality of life.

Help us to get people talking about the extra costs. Share our report on Facebook  or Twitter using the #ExtraCosts

We also have information about support with your fuel bills

What do recent announcements on PIP and ESA mean for disabled people?

Our welfare system plays an essential role in supporting disabled people to be more financially secure.

Personal Independence Payment (PIP) for instance helps disabled people to cover some of the additional costs faced as a result of an impairment or condition. For disabled people who are out of work, Employment and Support Allowance (ESA) is important in helping to meet day-to-day costs.

Over the past few months there has been a lot of attention on PIP and ESA. Here we look at what’s been happening and what these changes mean for disabled people.

High Court ruling on PIP

Back in April 2017 the Government made changes to PIP that tightened up access to the payment for many disabled people. We campaigned against these changes, which made a crude distinction between people with physical impairments and mental health problems.

Then, in December 2017, the High Court ruled that some of these changes were discriminatory and should be scrapped.

The Government last month said that it won’t be appealing this decision and that it will be reviewing all decisions relating to PIP awards since the payment  was introduced.  They estimate that up to 220,000 disabled people will receive backdated payments where necessary.

This is a welcome decision, as we know PIP is a lifeline for disabled people. In research we carried out with over 500 recipients of either PIP or DLA, 58 per cent said that even a small reduction in their PIP award would have a significant impact on their ability to live independently.

What does this mean for disabled people?

  • The Government will review all PIP assessment reports to identify individuals who could be eligible for a backdated payment.
  • This includes people who were not eligible for PIP following an assessment.
  • No one will need to go through a repeat assessment.
  • The Government has not yet announced when the review will start, or in what order claims will be reviewed.

PIP and ESA assessments

This week, the Work and Pensions Select Committee published a report following an inquiry in to how PIP and ESA assessments are working for disabled people.

This made recommendations to Government to improve the way that applications and assessments for PIP and ESA are carried out, such as using more accessible forms of communication and offering home assessments.

The Committee also put forward ideas to make sure decisions about disability benefits are fair and transparent. These include recording assessments, letting claimants know which pieces of evidence have been used to make a decision, and allowing individuals to review their report during the assessment.

We welcome this report and want to see Government act quickly to put these measures in place. However, it is clear that both the PIP assessment and Work Capability Assessment (WCA) for ESA are not fit for purpose and need urgent reform.

We want to see the PIP assessment replaced with an assessment that properly identifies the range and level of extra costs disabled people face.

We also want to see the Work Capability Assessment replaced with a new approach which recognises the full range of barriers that prevent disabled people entering and staying in work.

Reforming both of these assessments is crucial in ensuring disabled people are getting the right support – whether with disability-related costs or whilst out of work – and are able to live independently and participate fully in society.

What will we be doing next?

It’s vital our welfare system works for disabled people. Following the Government announcement on PIP and the Work and Pensions Select Committee report, we will be continuing to campaign for reform of both the PIP assessment and the WCA

If you have any concerns about your payments, you could contact Scope’s helpline for free for more information

Any new assessments need to be shaped by disabled people’s experiences. We want to hear about your experiences of applying for PIP and ESA. If you’d like to share your story, please comment below or email stories@scope.org.uk.

2017: an award-winning year in the life of Scope helpline

In 2017, Scope helpline won the Helplines Partnership ‘Helpline Impact’ award. The award recognises “helplines that have contributed to the sector over the longer term in an amazing way and are an example to others”.

We’ve always been so proud of our helpline service, our dedicated team and the amazing difference this vital work makes to disabled people and their families. But it’s also wonderful to have this external recognition and to win such a prestigious award.

“This is possibly the most helpful advice-line I have ever encountered. Thank you.”

In 2017, the Scope helpline responded to 22,837 requests for information and support by telephone, email and via Scope’s online community and social media networks.

We have also supplied answers to over 1.3 million requests for help and information via our website. This has risen steadily over the years:

“[Scope helpline] was immensely helpful and gave me much greater confidence in dealing with DWP (Department of Work and Pensions) which I was very daunted with. Thank you so much.”

Funding the extra costs of disability

Unsurprisingly, the number one topic you ask about is benefits. We have added extra capacity through the Benefits Training Company answering questions in the online community.

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 15,000 benefits calculations and over 12,000 grants searches.

In 2017 so far, the calculations have identified over £1.5 million per week in unclaimed benefits. This can make a massive difference to the lives of disabled people and their families, as this customer explains:

“This service exceeded my expectations… The outcome gives…  approx £151 per week instead of £111 per week as originally assessed. I can’t praise the advisors enough.”

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:

We have taken part in our first Facebook Live event on Universal Credit.

Becoming Disabled offers answers to the most frequently asked questions our helpline receives from people new to disability.

Our newly expanded equipment section in partnership with Which? is complemented by an occupational therapist in our online community.

We have also produced three information videos, which has been viewed nearly 100,000 times since they were launched:

“Just a note to say these films are absolutely excellent. Very clear and accessible. My son who has ASC (Autism Spectrum Condition) is currently undergoing a PIP assessment and I expect to go through the appeal process, so it’s really great to see this kind of resource being made available.”

 

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.

Scope helpline receives no Government support: £9 can help pay for a call to the helpline.

Please support us if you can.

Budget 2017 – so near and yet so far

The Chancellor today has announced the second Budget of this year and the first since the General Election. It was a deliberately low-key affair after a turbulent few months for the Government.

In this blog, we take a look at the impact that this will have on disabled people’s lives.

There was a much-needed announcement to Universal Credit which is a step in the right direction for disabled people. The seven-day initial waiting period for processing claims has been scrapped and the repayment period for advance payments has been extended from six months to twelve. Claimants will also be able to get a 100 percent advance now, rather than 50 percent.

However, as our helpline calls demonstrate, we remain concerned there are still fundamental problems with Universal Credit that were not addressed today.

The Government is failing to collect data on the number of disabled people claiming Universal Credit and their experiences. We know from our helpline that many disabled people are worried about what the shift to Universal Credit means for them and the loss of disability premiums means many disabled people will be financially worse off. With disabled people already paying extra costs of £550 a month related to their disability and less likely to have savings we oppose the loss of these premiums.

We need to see urgent reform

The Government has promised to get one million more disabled people into work by 2027. In order for that to happen, we need to see urgent reform to the Work Capability Assessment (WCA) so that it better identifies the barriers disabled people face to finding work.

With the Government expected to publish their response to the Improving Lives Green Paper shortly, we need to see ambitious reforms to support disabled people to find and stay in work. As well as reforming the WCA the Government need to look at what more employers can be doing to support their disabled employees and make sure schemes such as Access to Work are available to everyone who needs them.

Disappointingly the Chancellor did not take the opportunity to confirm that there will be no further cuts to disability benefits in this Parliament. We’d like to see the Government commit to protecting the value of vital payments such as Employment and Support Allowance and Personal Independence Payments.

A missed opportunity

While the announcement of more funding for the NHS was welcome, the Government has failed to act on social care again. The social care system is increasingly under pressure and while the Government has set out plans to consult on social care for older people it’s not clear what they’ll be doing to support the 278,000 disabled people who rely on social care for basic support.

Overall this Budget looks like another missed opportunity to improve the lives of the UK’s 13.3 million disabled people. With action needed to tackle the barriers disabled people face at work, at home and in their communities, we’d like to have seen the Chancellor be bolder.

If you have any questions or concerns about the changes made to your support, please call Scope’s Helpline on 0808 800 3333. 

Visit our website for more information on disability benefits.

How to appeal a Personal Independence Payment (PIP) benefit decision

Scope’s benefits advisor Debbie Voakes is presenting a set of films on how to appeal a PIP benefits decision. Read below for her guide to the five main steps:

1) The Mandatory Reconsideration process

You have one calendar month from the date on your decision letter to request a mandatory reconsideration.

Before you request a mandatory reconsideration go through your paperwork and pick out all the points that you don’t agree with. If possible, seek advice from a Citizens Advice Bureau, Disabled Person’s Organisation or a local welfare rights team. Don’t panic if you can’t get advice.

Review the PIP descriptors and work out why you should have qualified. If possible try and get some new evidence to support this. Call the Department for Work and Pensions (DWP) and explain your reasons for disputing the decision and point out why you feel that you should have qualified.

Can you do the activity reliably, safely, repeatedly, to an acceptable standard and in good time? If not, you might qualify for a higher score.

If you have further medical evidence, tell the DWP that you’ll send this as soon as you can. If you can, send it recorded or special delivery. Keep proof of postage.

If you can’t meet the deadline, tell the DWP as soon as possible. It’s best to keep within the timescales but if you can’t you might be allowed some more time.

2) From Mandatory Reconsideration to Appeal Tribunal

The Mandatory Reconsideration will be carried out by a different decision-maker at the DWP. They will review the claim form, the assessment report and all the supporting evidence that you sent in.

If the decision remains unchanged after the Mandatory Reconsideration, you will receive a copy of a Mandatory Reconsideration notice. You will be sent two copies of this and you’ll need one copy to send to the tribunal.

You will need to download an SSCS1 form. 

Try getting in touch with a benefits adviser to start building your case and work out your chances of success.

Join Scope’s online community where you can share appeal tactics and ask our benefits advisors specific questions.

If your SSCS1 form is going to be late, explain this on the form otherwise your appeal will not be accepted.

You can choose to have an oral or paper-based hearing. An oral hearing is better because you will be able to put your case forward in person. Only choose a paper-based hearing if your evidence is strong and clear and points to a clear decision.

Send your SSCS1 form and your copy of your Mandatory Reconsideration Notice to the tribunal. If possible send it by recorded delivery or special delivery.

Remember to keep records of all telephone calls and paperwork.

3) How to prepare for a PIP hearing

The DWP will look at their decision again once they have received your appeal. They can revise your award at any point up until the hearing if, for example, you send in new evidence.

You will be told the date of the hearing 14 days in advance. You should receive directions to the venue with transport links, accessibility information and also expenses. Review your paper evidence and think about what extra evidence you might need. Attending the hearing and telling the panel about your disability counts as evidence.

You can send in evidence at any point up until the hearing but don’t save it all up for the hearing as this could delay matters.

All papers relating to the appeal will be sent to the panel members before the hearing. This will give them the chance to identify if there are any problems or issues that may affect the hearing from going ahead.

4) On the day of the hearing

Take someone with you. This can be your representative if you managed to find one, could be your partner, a family member or a friend.

The tribunal will be made up of a tribunal judge, a doctor and a disability specialist. All are independent from the Department of Works and Pensions. Their role is to check the DWP’s decision and to ensure that the law has been applied correctly.

This is your chance to talk about how your disability affects you, how you feel you meet the descriptors and anything else that went wrong during the assessment process.

Normally tribunals will make a decision on the day and will confirm this in writing.

5) Further appeal

If you’re unhappy with the decision made by the first-tier tribunal, there is a further appeals process. You can appeal to the Upper Tribunal if you believe there has been an error in law.

This is a very complex area and you will need the help of a solicitor or a welfare benefits specialist. There may be some legal aid available to help you with your case.

Read PIP appeal tips from our online community.

How to prepare for a PIP assessment

Preparing to attend a Personal Independence Payment (PIP) assessment can be a difficult time.  Scope has created a short film to guide you through the process.

The PIP assessment letter

When you get your letter, check the date and venue of the assessment. If there is a problem, tell the Department of Work and Pensions or the assessment provider as soon as possible.

Ask for the support you need to attend the assessment

Check the parking and facilities near the assessment centre.

Read the assessor’s guidance beforehand

The more prepared you are, the easier it is to relax. Read the guidance a week before the assessment so you are prepared.

Take a copy of your application and supporting evidence

It’s useful to take along your evidence so that you can refer to it during the assessment to ensure you’re covering all the bases.

Don’t assume the assessor knows anything about you

Be as honest and open as you can about how your impairment impacts on your health and well-being. Think about the everyday things you do to manage your impairment. It’s important to go into as much detail as possible about what a day in your life is like.

If you make it seem as if you are able to manage doing something but normally you’re not able to do it, then the assessor may assume that you can always do that thing.

Don’t ‘put on a brave face’ about how you deal with your impairment.

Talk about support you need even if you don’t get it now

At the assessment you have to show what you can’t manage, not how you do.

Ask someone who knows you well to come with you

Take someone with you to your assessment. This can help if you need physical support to get to the assessment centre but also it’s useful to have someone else listening in and filling in things you may miss.

And if you can’t get support from a family member or a friend, maybe consider contacting an advocacy service or someone who can just be there to support you.

Read more information on PIP assessments.

PIP is a lifeline for disabled people and needs to be protected

We know that life costs more if you’re disabled. Personal Independence Payments (PIP) play a key role in helping disabled people to manage some of these extra costs.

Last week the Government announced plans to tighten up access to PIP. We are concerned that this reduction in financial support will make it harder for many disabled people to live independent and fulfilling lives.

The extra costs of disability

Scope research shows disabled people spend on average £550 a month on costs related to their impairment or condition. For one in 10, these costs amount to £1,000 a month.

The additional costs disabled people face broadly fall into three categories:

  • Expensive purchases of specialised equipment, such as wheelchairs or screen readers.
  • Greater use of non-specialised goods and services, such as energy or taxis and private hire vehicles.
  • Paying more for non-specialised goods and services, such as insurance or higher tariffs for accessible hotel rooms.

These costs have a detrimental impact on disabled people’s financial stability. For instance, disabled people have an average of £108,000 fewer savings and assets than non-disabled people, whilst households with a disabled person are more likely to have unsecured debt compared to households without a disabled member.

The financial barrier of extra costs makes it harder for individuals to get a job, access education and training opportunities, pay into savings and pensions, and participate fully in their community.

The role of PIP

The role of PIP – and its predecessor Disability Living Allowance (DLA) – is to support disabled people to meet the additional costs of disability.

Unlike other aspects of the welfare system, PIP is not an income replacer like Employment and Support Allowance or Jobseeker’s Allowance, nor is it designed to boost people’s income when wages are low like tax credits. It serves to level the playing field between disabled people and non-disabled people by helping to tackle the financial penalty of disability.

This puts disabled people in a stronger position to contribute to, and benefit from economic growth as employees, savers and consumers. In research we carried out with over 500 recipients of either PIP or DLA, over half said that PIP was important in helping them to work. A further 58 per cent said that even a small reduction in their PIP award would have a significant impact on their ability to live independently.

Our concerns with proposed changes to PIP

Scope has welcomed previous commitments by Government to protect the value of PIP and keep it free from any taxation or means-testing.

However, last week proposed changes to PIP regulations were announced that would make it harder for many disabled people to score points for certain descriptors in the assessment.

This follows two recent legal judgements which ruled in favour of awarding higher points during a PIP assessment for people who need help taking medication, or who can’t travel alone due to “psychological distress”.

Since the announcement, Scope has received a number of queries through its helpline, online community, social media and customer contact teams from current disabled claimants who are worried about whether these new changes would affect them.

A new PIP assessment

We are concerned that the changes Government are proposing make a crude distinction between those with physical impairments and mental health problems, which will lead to many disabled people missing out on vital financial support with disability-related costs.

However, we know that someone’s impairment or condition is not an accurate indicator of the additional costs they face. Disabled people have unique experiences of additional costs, which often arise as a result of barriers to participating fully in society. For instance, somebody with an anxiety disorder who finds it difficult using public transport may have to consequently spend more on taxis to get around.

We want to see reform of the PIP assessment so that it accurately captures the range and level of disabled people’s extra costs. Disabled people with lived experience of these costs should be directly involved in designing and setting a new assessment criteria.

What Scope is doing

We are calling on Government to think again about these changes and are briefing government officials about why it is so important that they don’t go ahead.

Our Chief Executive has also spoken to the Secretary of State for Work and Pensions to raise our concerns and ask Government to rethink its decision to reduce access to PIP.

We will continue to raise our concerns with PIP in the media to ensure Government hears disabled people’s experiences of extra costs.

We’re keen to hear from you about why PIP is important to you or about your experiences of getting PIP. If you’d like to share your story, please comment below or email stories@scope.org.uk.

For further information about PIP, visit Scope’s website or call our helpline for free on 0808 800 3333.

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 have a love-hate relationship with my benefits”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.

I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.

When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.

My most heart-breaking moment

I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.

In 2011,  I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie wearing her face mask

In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.

It made me anxious and worried

In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.

This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.

I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.

Josie, a young disabled woman, following a reaction where her face has swollen and become red
Josie following a reaction with swelling and redness

I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.

In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.

Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.

What needs to happen next

My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.

We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.

Visit Josie’s blog site to learn more about Mast Cell.

If you have any questions about benefits or employment, contact Scope’s helpline where we provide free, independent and impartial information and support to disabled people and their families.

You can also start or join a discussion on our online community.

Welfare and Work Bill – our priorities in the closing stages

The Welfare and Work Bill that is currently going through Parliament is a big priority for Scope because it will have a major impact on the employment prospects of disabled people.

As scrutiny reaches its final stages in the House of Lords, and as set out in our last blog post on the Bill, Scope is focused on two key issues – opposing the proposed cut to Employment and Support Allowance (ESA) for some disabled people, and persuading the Government to report on progress in meeting their commitment to halve the disability employment gap.

Disability employment gap reporting

A key issue for Scope is requiring the Government to report annually on progress in meeting its manifesto commitment to halving the disability employment gap. The first clause of this Bill introduces a reporting obligation on the Government’s progress towards achieving full employment, ensuring Parliamentarians and the public are kept informed of progress towards meeting this target.

Scope believes that this should include a requirement for the Government to report annually on meeting its commitment to halve the disability employment gap, which itself set as a Manifesto commitment.

The gap between disabled people’s employment rate and the rest of the population has remained stubbornly static at around 30% for the last decade. The Government cannot hope achieve its objective of full employment unless it halves this gap. Reporting annually on progress towards doing so, will draw attention and accountability to this very welcome commitment, and will greatly help to prioritise its delivery by the Government.

This looks set to be the first issue that Peers debate then the Bill’s Report Stage starts later today.

Opposing reduction to ESA

On Wednesday, they will turn their attention to the Government’s proposed cut to Employment and Support Allowance for disabled people in the Work Related Activity Group.

In previous blog posts and Parliamentary briefings, we have set out how this proposed cut of £30 a week will adversely affect some disabled people, who have been found unfit for work by an independent assessment. The cut will disincentivise them from finding employment, and push them further from the labour market.

Two important developments have powerfully brought home this message to Parliamentarians recently. At Lords Committee Stage, Scope and our coalition partners in the Disability Benefits Consortium (DBC), supported Lord Low, and Baronesses Meacher and Grey Thompson, to review the impact of the ESA WRAG cut.

From evidence received from disabled people, as well as organisations representing them, the review found the proposed cut to ESA WRAG would make it much harder for people in this group to find work. This is because it would more difficult to be able to afford training, work experience and volunteering. Cutting benefits would also lead to stress and anxiety as people struggled to pay the bills, affecting their physical and mental health, according to the review’s findings.

It recommends that Government should not push ahead with the cut. Instead, they should put in place better support for disabled people to help them build up their skills and support to look for, and stay in, work.

Disabled people had the opportunity to communicate these messages face to face with MPs  in a lobby of Parliament a couple of weeks ago, which was attended by nearly a hundred members of Parliament.

The review and lobby of Parliament have generated considerable momentum behind the campaign to reverse the ESA WRAG reduction. Both independent and leading opposition Peers have signed up to amendments to scrap the ESA WRAG cut, and its equivalent in the Universal Credit system. Scope and our DBC partners are very hopeful that this will herald a vote against a reduction in ESA on Wednesday night in the House of Lords.

We will be live tweeting the debates on Monday 25 January and Wednesday 27 January, and you can follow proceedings live online on Parliament TV. Watch out for more blog updates on the bill as it leaves the Lords, and MPs consider any changes they have made.