Tag Archives: Personal Independence Payment (PIP)

“I’m 22 and financially screwed” – help us tackle the disability price tag

Our new report The disability price tag highlights how disabled people on average face extra costs of £570 a month related to their impairment or condition. Many disabled people have shared their experiences of extra costs with us, and the impact that this has on their lives. It’s an injustice that needs to change. In this blog, Piers, a student in Wales, shares his experience. 

I’m currently studying for a Masters in Physical Oceanography. Being at university, surrounded by my non-disabled peers, has really highlighted the sheer amount of extra money that I have to spend, just because I happen to use a wheelchair.

“I’d say that every month I have an extra cost of about £1300 compared to my non-disabled friends.”

Firstly, my wheelchair itself was incredibly expensive and I had to pay for that myself. The wheelchair offered by the NHS was unsuitable for my needs, so I had to pay over £4,800 for one just to be able to get around and go to lectures just like everyone else.

On top of that, on average, I spend another £300 a month replacing parts and maintaining the chair. Even with this upkeep, it needs to be completely replaced every three or four years.

My housing is also more expensive than my friends – the only accessible student housing available is £110 per week, whereas friends of mine pay as little as £40 a week for similar housing.

Travel costs are increased due to the unreliability of public transport, the nature of hills in North Wales and the location of my lectures. I have to spend about £400 a month on taxis just to get around.

Food costs are also higher. I require easy to prepare food, either pre-chopped or in small quantities. My friends can buy items like pasta in bulk or do a large shop and carry it home. Unfortunately as a wheelchair user, it’s really difficult to manage more than a small basket of items whenever I go shopping. So this can increase my monthly bill compared to my friends by an extra £150.

Related to that, because so many shops aren’t accessible, I have to order a lot of the things I need online and get charged for postage. It may not seem much per item but all of those payments add up over the year.

Man holding a basketball on a court playing wheelchair basket ball

Financially, I’m screwed

My income each year is decreasing. Even with a student loan, Disabled Students’ Allowance and Personal Independence Payment (PIP), I still face a monthly shortfall.

It plays havoc with my social life because I can’t afford to do much, and if I do anything I’m worried about its cost. I have to take almost every freelance opportunity to earn any money I can to try to keep myself afloat, which impacts on my studies.

It’s socially exclusionary as well because my friends stop asking me to go do things with them because they assume I can’t afford things, which means I do even less.

Basically I’m 22 and financially screwed. It’s almost impossible to get a part time student job just because I use a wheelchair. I’ll be leaving university with at least £130,000 debt.

Man on a beach in a wheelchair next to a sign that says 'seating on promenade prohibited'

What needs to change

Firstly, businesses have a huge role to play. I’d love it if the items I needed to live independently weren’t extortionately priced. Companies know that as a disabled person I need the item so they can charge whatever they want. And there should be no delivery charge or a minimum spend for disabled customers.

There should be increases to PIP so it’s in line with the reality of these extra costs and investment into accessible housing so that it isn’t a quality that increases prices of housing astronomically. I also want to see the NHS bespoke wheelchair service restored and free NHS treatment – this would greatly reduce my extra costs.

Related to this, there’s the issue of employment. Extra costs aside, people rely on employment for financial security, yet there are many barriers to employment for disabled people – employers’ attitudes and discrimination being one of them.

Help us tackle the extra costs faced by disabled people. Find out more about extra costs, then share our report on Twitter or Facebook.

You can also read more stories or share your own experiences in our extra costs discussion on the community.

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.

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.

How can the next government improve disabled people’s financial security?

We want the next government to deliver Everyday Equality with disabled people. It must put the interests of disabled people at the heart of its agenda and deliver meaningful change over the next five years to tackle the barriers that prevent disabled people from participating fully in society.

A major barrier to achieving everyday equality is the additional costs disabled people face as a result of their impairment or condition.

That’s why we are calling on the next government to improve disabled people’s financial security.

Life is more expensive if you are disabled

On average, disabled people spend £550 a month on costs related to their impairment or condition. These costs may include expensive items of specialised equipment, higher heating bills, or more costly insurance premiums.

Infographic reads: Life costs more if you're disabled. On average, disabled people spend £550 a month on disability related costs

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 into work, access education and training opportunities, and participate fully in their community.

It is vital that the next government tackles the financial penalty experienced by disabled people.

Ensuring disabled people have adequate support to meet extra costs

Personal Independence Payment (PIP) – the successor to Disability Living Allowance (DLA) – plays a key role in helping disabled people meet some of the additional costs of disability.

However, we know that applying for PIP is often a stressful process for disabled people. Our helpline saw a 542 per cent rise in PIP-related calls in the period April 2016 to March 2017 compared to the year previously, many of which were concerning difficulties disabled people and their families were experiencing with the assessment.

The assessment for PIP looks at how a person’s impairment or condition impacts upon their ability to carry out a series of day-to-day activities. We are concerned that this does not always capture the full range of additional costs that disabled people face. This can be seen by the fact that two thirds of individuals are successful when they appeal a decision following their PIP assessment.

That’s why we’re calling for the next government to protect the value of PIP and develop a new assessment for the payment that accurately identifies the range and level of disabled people’s extra costs.

We also know that life is particularly difficult for families where both adults and children face disability related costs.

As such, we want to see PIP and DLA act as a passport to other benefits for families with disabled children, such as free school meals and support with health costs.

Driving down extra costs

Action is also needed to drive down the extra costs that disabled people face in the first place.

Households with a disabled person spend £249 billion a year, the so-called “purple pound”. Yet, disabled people are too often unable to access essential goods and services at an affordable price, making it difficult to capitalise on this spending power.

Many disabled people also encounter poor customer service from businesses, with three quarters having left a shop or business because of a lack of disability awareness.

Two particular sectors where disabled people tell us they struggle as consumers are energy and insurance. For instance, Scope research shows that 29 per cent of disabled people have struggled to pay their energy bills in the past year. In the insurance market, two and a half million disabled people feel they have been overcharged for insurance because of their impairment or condition.

We want the next government to make sure essential markets, such as energy and insurance, have adequate services and support in place to help tackle the problem of additional costs and empower disabled people as consumers.

Tell us what being financially secure means to you

You can read more about our priorities for the next government and how you can register to vote in this election.

What does being financially secure mean to you? Email the stories team at Scope and tell us your experience – stories@scope.org.uk.

You can also join the conversation on social media by using the hashtag #EverydayEquality.

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.

Share your experiences of claiming Personal Independence Payment

The Government has launched an independent review of how the assessment for Personal Independence Payment (PIP) is working. This follows a previous independent review of PIP in 2014.       

PIP, alongside Disability Living Allowance (DLA), is a payment that provides working-age disabled people with support to meet the extra costs of disability. Our research shows that these costs amount to an average of £550 a month.

These costs might include expensive items of specialised equipment such as wheelchairs, spending more on things like energy to keep warm or taxis to get around, and even certain types of insurance.

A call for evidence has been launched as part of this review to gather the views of individuals who have claimed PIP for themselves, or on someone’s behalf, about their experiences of the process. This includes new claims and DLA reassessment claims, both under normal rules and Special Rules for terminally ill people. In particular, they are interested in the following:

  • How effectively further evidence is being used to assist in making the correct claim decision.
  • Data sharing within the Department for Work and Pensions and across government, including the way information gained from the PIP assessment is shared with other organisations to improve health and care services.
  • The general claimant experience.

Sharing your views will help to inform the review’s final conclusions on the effectiveness of the PIP process, which will be presented to government.

How to respond

This call for evidence closes on Friday 16 September 2016, 5pm. You can respond via the online form.

Alternatively, you can submit a response in the following ways:

Email: pip.independentreview@dwp.gsi.gov.uk

Post: PIP Independent Review Team, Department for Work and Pensions, Floor 4, Caxton House, Tothill Street, London, SW1H 9NA

This call for evidence is available in a range of formats, including large print, Easy Read, audio, British Sign Language (BSL), Braille, large print, audio cassettes, CDs and BSL DVDs.

To request any of these formats, please use the email and post contact details listed above.

Tell Scope about your experiences of PIP

Scope will be responding to this call for evidence. We are keen to include the experiences of disabled people who claim PIP as part of our response. You can tell us about your experiences in the following ways:

Email: minesh.patel@scope.org.uk

Telephone: 020 7619 7375

The Budget 2015 – The announcements we’ll be looking for

On Wednesday the Chancellor George Osborne will deliver the last budget of this Parliament with some commentators arguing that with this statement “the general election will kick off in earnest”.

There has been a lot of speculation about the Chancellor’s statement and here at Scope we will be following the Budget closely to see what it will mean for disabled people and their families. We’ll be looking out for announcements in the following three areas:

Halving the disability employment gap

A key theme of the Chancellor’s speech is expected to be jobs and growth.

We know that disabled people want the same opportunities to work as everyone else and nine in ten disabled people are in work or have worked in the past. But for the Chancellor to achieve his aim of “full employment”, more must be done to address the disability employment gap.

Access to Work supports disabled people to stay in work and progress in their careers. The Chancellor could strengthen Access to Work, to make sure more disabled people can benefit.

He could build upon the Minister for Disabled People’s welcome announcement last week about the introduction of personal budgets for Access to Work. This will give disabled people more control over how they access the support which enables them to work.

However, we are concerned about new proposals to cap the amount of funding each individual can receive through Access to Work. A cap could mean that disabled employees, such as those who require British Sign Language interpreters, could lose their support and would be unable to continue working.

We’ll also be looking to the Chancellor to use his focus on regional growth to create programmes specifically aimed at improving employment rates amongst disabled people.

Protection of DLA and PIP

Life can cost more if you are disabled. The extra costs faced by disabled people can have a significant impact on disabled people’s living standards, who spend on average £550 per month on costs related to their disability. Disability Living Allowance (DLA) and Personal Independence Payment (PIP) are payments that are designed to contribute towards these extra costs.

Welfare spending is also likely to be a key theme of the Budget. Last year the Chancellor announced in his speech at the Conservative Party Conference that a future Conservative Government would protect DLA and PIP in any freeze on benefits. We’ll be looking to the Chancellor to commit to this in the Budget.

This month’s Extra Cost’s Commission interim report highlighted the need to tackle the underlying drivers of the extra costs disabled people face. One area that the Commission identified was the need to improve online access for disabled people. Thirty per cent of disabled people have never used the internet, compared to seven percent of non-disabled people. This prevents disabled people accessing appropriate financial products and getting some of the best deals on goods and services.

Anything the Chancellor announces to improve digital inclusion should consider how to support more disabled people to get online.

Investment in social care

Social care supports disabled people to live independently, work and play an active part in the community.

With the Budget taking place just two weeks before the landmark Care Act comes into force, The Chancellor must take steps to introduce a sustainable funding settlement for social care.

Much focus has been placed on whether the Chancellor will commit to investing £2bn per year in the NHS, as set out in NHS England’s Five Year Forward View. However, investment in the NHS cannot be looked at in isolation from social care funding. Last week the Care and Support Alliance published the findings of a survey of over 800 English GPs which found that almost nine in ten believe reductions in social care services have contributed to pressures in their surgeries.

The Chancellor should use his final Budget before the election to prioritise investment in the social care system so that the ambition set out in the Government’s Care Act in this Parliament can be realised in the next.

What makes me frustrated? People not listening to me – #100days100stories

John lives in a shared house in Hereford, with support from Scope staff. We first shared his story in December 2014, and we’re republishing it here as part of our 100 Days, 100 Stories campaign.

The night before John and I met, he hosted his 50th birthday party in a local social club. More than 100 people came, from all parts of his life – friends, people he’d met while volunteering, support workers, even his fitness instructor.John in a coffee shop near his home

John lives in a supported living house run by Scope in Hereford, and has chosen to share with two others rather than live alone. He has cerebral palsy, uses an electric wheelchair and has learning difficulties.

Becoming more independent

I met him, along with Lottie, who manages Scope’s service in Hereford, in the café of a theatre near his home. John arrives dead on time, unsupported and under his own steam. When we’re settled, Lottie reminds him that this wasn’t always the case.

“We worked together for about two years, learning how to go independently in and out of town. We’d go into town together – I used to sit in a coffee shop in the centre of town, and you used to go off and cross the road to the newsagents and then come back when you’d bought whatever you needed to buy”.

“We did that for 12 months – you’d have different tasks to do, going into WH Smiths or the bank, and things like that.”

“[Now] I get it all by myself,” adds John.

“You do a lot of things yourself now. Whereas if you go back 10 years, you would have probably spent about an hour a day on your own, and that was only at home, never out. You’ve learnt these skills.”

John and Lottie have worked together for 20 years, and tJohn in a coffee shop near his homehey have a strong mutual understanding. Lottie encourages John in the conversation as talking is quite difficult for John, but he listens and often adds his own thoughts.

Leaving residential care

As a young man, John lived in a large care home for disabled people. It had more than 60 beds, and was out in the countryside miles from the nearest town. John had little control over his day-to-day life and most decisions were made for him, from what to eat to what time to go to bed.

“[It was] horrible. You couldn’t do nothing. There was no town to go into. You’d have to ask the staff to take us out in the van,” he says.

John lived there until his mid twenties, when he moved to a house run by Scope’s community support service. He later became a tenant in the house, which means he can change his care provider if he chooses without having to move out. He pays for his team of support workers out of his personal budget, signing the cheques himself.

“I like to choose”

He is involved in all kinds of activities – from gardening at a local college to wheelchair football, to a music club where he volunteers to collect members’ subscriptions and take the money to the bank. During our conversation, at least half a dozen people stop to say hello to him.

“[In the future I’d like to] do more, like I am now,” he says.

Towards the end of our talk, Lottie asks John what makes him frustrated. “People not listening to me,” he says. “I like to choose. My own food. Be treated normally.

“I do things by myself, but there’s someone there if I need them.”

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