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‘Home first’ model aims to stop patients being stranded on hospital wards

With winter looming, health and care teams are being urged to radically overhaul discharge procedures to prevent patients being left stranded on hospital wards. New approaches are yielding striking results that could help avert a beds crisis – and improve older people’s chances of continuing to live independently.

The latest thinking on hospital discharge is to get people home and then carry out assessment of their support needs and rehabilitation. Hospital trusts and their community health and social care partners are being encouraged to adopt a “discharge-to-assess” (D2A) or “home-first” model.

Where the models have been tested, the number of patients subject to delayed discharge has plummeted; the number of patients going into residential care has also shrunk dramatically – in one instance, almost to nothing.

“We can see that the impact of D2A is huge,” says Liz Sargeant, clinical lead for the national emergency care improvement programme. “Ten days in bed for patients over 80 is equivalent to 10 years’ ageing of muscles.”

This deconditioning means that some people go into hospital never to see their own home again. “Yet people can instead be discharged, then supported in their own homes,” says Sargeant.

Images of people waiting for trolleys in A&E and reports of routine operations being cancelled dominate the news every winter, as demand for hospital beds spikes. Nearly two thirds of hospital inpatients at any one time are 65 or older, according to the National Audit Office, while delays in discharge, or “transfers of care”, are almost a third up on 2014. That’s equivalent to almost 6,000 beds a day being taken up unnecessarily, with 55% of delays attributed to the NHS – principally “patients awaiting further non-acute NHS care” – and 37% attributed to social care, principally patients awaiting a care package for when they return home.

Measures announced in July aimed at prompting councils to cut delays on the social care side have proved controversial. Critics have questioned the rationale of threatening to cut funding for councils that fail to respond. But part of the drive to free up as many as 3,000 extra beds is based on an expectation by NHS Improvement (NHSI), the agency that works with care providers, that hospitals will adopt the D2A model as good practice and have just one person carry out needs assessments.

The agency points to results in east London, where Tower Hamlets Together, a collaboration of health and social care organisations, has piloted D2A. The average length of hospital stay is down and there has been a dramatic fall in the number of patients ending up needing long-term care, says Patricia Oguta, interim team manager for hospital social services.

When the pilot was run in 2015-16, just 1% of patients who were discharged under the new arrangements, then assessed at home for care packages, reablement and therapy, ended up in residential or nursing care – compared with an estimated 50% of patients who had conventional in-patient rehabilitation.

The approach is now a formal “care pathway” within the admission avoidance and discharge service operated by the East London NHS foundation trust. Running seven days a week from 8am to 6pm, it is staffed by two social workers, four occupational therapists (OTs), two physiotherapists, three nurses and one rehabilation support worker. Patients are given an assessment on the day of referral, if required, and receive up to six weeks’ community input post-discharge. Short-term night care is also possible. The full social care assessment process starts two weeks after discharge, to fully address the change in needs.

“Tower Hamlets’ success has been down to partnership working and a whole-system approach, with a big emphasis on supporting people in their homes,” says Oguta. “As a result there are fewer people going into residential care and we have been able to close one of the rehabilitation wards for the elderly.”

Another success story is in Kent, where Medway foundation NHS trust has shown what can be achieved with the right mindset. The trust came out of a record four years in special measures in April after overhauling its discharge arrangements. Working in partnership with Medway clinical commissioning group (CCG), Medway council and Medway Community Healthcare, a community interest company, the trust developed the Home First initiative – to provide support for patients who are medically fit to be discharged, but still require additional home support.

Again, results have been astonishing – a 25% drop in the number of delayed transfers of care in three months of the pilot last year, with an average of 32 patients discharged by the Medway Maritime each week. That number has since increased to 40, and a total of 2,000 patients have been discharged under the seven-days-a-week scheme, which has four patient pathways, for those needing little or no support through to those with complex needs who may need intermediate care and may not be able to go home safely immediately. Data shows permanent admissions to care homes for over-65s have halved since introduction of the scheme.

Barbara Littlewood, 87, from Allhallows, near Rochester in Kent, is a fervent advocate of Home First. She was supported to return to her bungalow last winter, following surgery on her knee, and spent just five days in hospital, compared to three weeks for a similar operation in the past.

“I can never sleep in hospital so I was relieved to get home,” says Littlewood. “I had carers in three times a day and an OT came to oversee my exercises. Everyone made sure I had all I needed to get around my home safely and independently.”

Lisa Riley, former Home First lead for Medway Community Healthcare, who now works with NHSI, recalls that Medway’s D2A scheme was implemented in April last year just a few weeks before a visit by inspectors from the Care Quality Commission. It used existing teams and directed all care via that route – removing historical “territories” and creating a single point of access for all coordination of a patient’s discharge. Under the new system, transport is arranged for patients, who are assessed in their own homes by an OT within two hours of leaving hospital. The care package may also involve telecare and wraparound care, with people ringing to make sure medication is taken.

Riley, who has spoken to 30 other health and social care organisations about the Medway approach, admits that one model won’t suit every situation. However, she believes the key is to make it as simple as possible and ensure that someone has leadership of the overall project, as well as giving control to staff.

There is no doubt that the Medway model has involved a huge culture change. Borne out of necessity, with the trust needing to improve on its special measures rating, Home First was implemented throughout the Medway Maritime hospital. The success of the scheme shows how it is possible to make change within current systems. By placing a greater emphasis on an individual patient’s needs, rather than on organisational boundaries, and by making imaginative use of money, resources and skills across established silos, the Medway did enough to elevate itself out of special measures.

Sarah Mitchell, a former director with the Local Government Association, who is now strategic adviser for social care for NHSI’s emergency care improvement programme, agrees that cultural change is essential. But she stresses that money needs to be put into community health services to support the change. “There is a focus on front-door services, but the availability of district nurses and assistant nurses reduces pressure,” says Mitchell. “If you want the community to do this, you have to invest in this.”

The case for pushing people, within their capabilities, to do more for themselves, so that they avoid becoming dependent is “overwhelming”, says Sargeant. “We ask people to make cups of tea in hospital occcupational therapy kitchens and walk upstairs, even if they live in a bungalow or on one level of their house,” she says. “We ask them intimate questions about how they manage their personal care and then decide whether they have passed or failed these tests. For people with dementia, this is even more challenging.

We would not keep children in hospital unnecessarily, she adds, so why do so with older people? “We need a cultural change; we need to develop a home-first mindset. It is happening in some places, but there is slow progress in others. It needs to happen everywhere.”

‘They are talking about a walk-in shower’

Marlene Decozar was celebrating her 80th birthday surrounded by her close family at her home in east London earlier this year. Days later she was on a hospital ward because of a spinal fracture brought on by thinning of the bones.

Confused and in extreme agony, she had been taken by ambulance to the Royal London hospital. Yet within a week, she was back at her one-bedroom home in Poplar with the support of the Tower Hamlets reablement team.

Older woman at home


Happy to be home – Marlene Decozar. Photograph: Lisa Warren for the Guardian

“In hospital they got my pain under control,” Decozar says. “They then sent different services to see me and follow up back at home. I still have to have help getting in and out of the shower as I can’t bend.

“The occupational therapist comes once a week and they are even talking about getting me a walk-in shower, which will be brilliant,” she adds.

For daughter Lisa Warren, who lives in nearby Hackney, the care has been an eye-opener. She says: “I thought my mum would be stuck in hospital for weeks.

“The reablement team has been supporting her to be independent. They are talking about fitting a wet room and they have given her a tray on wheels, so she can make herself cups of tea etc. I was worried that she would get six weeks of care and that would be it. But the support has been ongoing. Carers come in and the team has extended the help for her while they sort out a care package. We were worried about how she would cope, but she is just really happy to be back home with her dog, Toffee.”

Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com.

If you’re looking for a social care job or need to recruit staff, visit Guardian Jobs.

‘Home first’ model aims to stop patients being stranded on hospital wards

With winter looming, health and care teams are being urged to radically overhaul discharge procedures to prevent patients being left stranded on hospital wards. New approaches are yielding striking results that could help avert a beds crisis – and improve older people’s chances of continuing to live independently.

The latest thinking on hospital discharge is to get people home and then carry out assessment of their support needs and rehabilitation. Hospital trusts and their community health and social care partners are being encouraged to adopt a “discharge-to-assess” (D2A) or “home-first” model.

Where the models have been tested, the number of patients subject to delayed discharge has plummeted; the number of patients going into residential care has also shrunk dramatically – in one instance, almost to nothing.

“We can see that the impact of D2A is huge,” says Liz Sargeant, clinical lead for the national emergency care improvement programme. “Ten days in bed for patients over 80 is equivalent to 10 years’ ageing of muscles.”

This deconditioning means that some people go into hospital never to see their own home again. “Yet people can instead be discharged, then supported in their own homes,” says Sargeant.

Images of people waiting for trolleys in A&E and reports of routine operations being cancelled dominate the news every winter, as demand for hospital beds spikes. Nearly two thirds of hospital inpatients at any one time are 65 or older, according to the National Audit Office, while delays in discharge, or “transfers of care”, are almost a third up on 2014. That’s equivalent to almost 6,000 beds a day being taken up unnecessarily, with 55% of delays attributed to the NHS – principally “patients awaiting further non-acute NHS care” – and 37% attributed to social care, principally patients awaiting a care package for when they return home.

Measures announced in July aimed at prompting councils to cut delays on the social care side have proved controversial. Critics have questioned the rationale of threatening to cut funding for councils that fail to respond. But part of the drive to free up as many as 3,000 extra beds is based on an expectation by NHS Improvement (NHSI), the agency that works with care providers, that hospitals will adopt the D2A model as good practice and have just one person carry out needs assessments.

The agency points to results in east London, where Tower Hamlets Together, a collaboration of health and social care organisations, has piloted D2A. The average length of hospital stay is down and there has been a dramatic fall in the number of patients ending up needing long-term care, says Patricia Oguta, interim team manager for hospital social services.

When the pilot was run in 2015-16, just 1% of patients who were discharged under the new arrangements, then assessed at home for care packages, reablement and therapy, ended up in residential or nursing care – compared with an estimated 50% of patients who had conventional in-patient rehabilitation.

The approach is now a formal “care pathway” within the admission avoidance and discharge service operated by the East London NHS foundation trust. Running seven days a week from 8am to 6pm, it is staffed by two social workers, four occupational therapists (OTs), two physiotherapists, three nurses and one rehabilation support worker. Patients are given an assessment on the day of referral, if required, and receive up to six weeks’ community input post-discharge. Short-term night care is also possible. The full social care assessment process starts two weeks after discharge, to fully address the change in needs.

“Tower Hamlets’ success has been down to partnership working and a whole-system approach, with a big emphasis on supporting people in their homes,” says Oguta. “As a result there are fewer people going into residential care and we have been able to close one of the rehabilitation wards for the elderly.”

Another success story is in Kent, where Medway foundation NHS trust has shown what can be achieved with the right mindset. The trust came out of a record four years in special measures in April after overhauling its discharge arrangements. Working in partnership with Medway clinical commissioning group (CCG), Medway council and Medway Community Healthcare, a community interest company, the trust developed the Home First initiative – to provide support for patients who are medically fit to be discharged, but still require additional home support.

Again, results have been astonishing – a 25% drop in the number of delayed transfers of care in three months of the pilot last year, with an average of 32 patients discharged by the Medway Maritime each week. That number has since increased to 40, and a total of 2,000 patients have been discharged under the seven-days-a-week scheme, which has four patient pathways, for those needing little or no support through to those with complex needs who may need intermediate care and may not be able to go home safely immediately. Data shows permanent admissions to care homes for over-65s have halved since introduction of the scheme.

Barbara Littlewood, 87, from Allhallows, near Rochester in Kent, is a fervent advocate of Home First. She was supported to return to her bungalow last winter, following surgery on her knee, and spent just five days in hospital, compared to three weeks for a similar operation in the past.

“I can never sleep in hospital so I was relieved to get home,” says Littlewood. “I had carers in three times a day and an OT came to oversee my exercises. Everyone made sure I had all I needed to get around my home safely and independently.”

Lisa Riley, former Home First lead for Medway Community Healthcare, who now works with NHSI, recalls that Medway’s D2A scheme was implemented in April last year just a few weeks before a visit by inspectors from the Care Quality Commission. It used existing teams and directed all care via that route – removing historical “territories” and creating a single point of access for all coordination of a patient’s discharge. Under the new system, transport is arranged for patients, who are assessed in their own homes by an OT within two hours of leaving hospital. The care package may also involve telecare and wraparound care, with people ringing to make sure medication is taken.

Riley, who has spoken to 30 other health and social care organisations about the Medway approach, admits that one model won’t suit every situation. However, she believes the key is to make it as simple as possible and ensure that someone has leadership of the overall project, as well as giving control to staff.

There is no doubt that the Medway model has involved a huge culture change. Borne out of necessity, with the trust needing to improve on its special measures rating, Home First was implemented throughout the Medway Maritime hospital. The success of the scheme shows how it is possible to make change within current systems. By placing a greater emphasis on an individual patient’s needs, rather than on organisational boundaries, and by making imaginative use of money, resources and skills across established silos, the Medway did enough to elevate itself out of special measures.

Sarah Mitchell, a former director with the Local Government Association, who is now strategic adviser for social care for NHSI’s emergency care improvement programme, agrees that cultural change is essential. But she stresses that money needs to be put into community health services to support the change. “There is a focus on front-door services, but the availability of district nurses and assistant nurses reduces pressure,” says Mitchell. “If you want the community to do this, you have to invest in this.”

The case for pushing people, within their capabilities, to do more for themselves, so that they avoid becoming dependent is “overwhelming”, says Sargeant. “We ask people to make cups of tea in hospital occcupational therapy kitchens and walk upstairs, even if they live in a bungalow or on one level of their house,” she says. “We ask them intimate questions about how they manage their personal care and then decide whether they have passed or failed these tests. For people with dementia, this is even more challenging.

We would not keep children in hospital unnecessarily, she adds, so why do so with older people? “We need a cultural change; we need to develop a home-first mindset. It is happening in some places, but there is slow progress in others. It needs to happen everywhere.”

‘They are talking about a walk-in shower’

Marlene Decozar was celebrating her 80th birthday surrounded by her close family at her home in east London earlier this year. Days later she was on a hospital ward because of a spinal fracture brought on by thinning of the bones.

Confused and in extreme agony, she had been taken by ambulance to the Royal London hospital. Yet within a week, she was back at her one-bedroom home in Poplar with the support of the Tower Hamlets reablement team.

Older woman at home


Happy to be home – Marlene Decozar. Photograph: Lisa Warren for the Guardian

“In hospital they got my pain under control,” Decozar says. “They then sent different services to see me and follow up back at home. I still have to have help getting in and out of the shower as I can’t bend.

“The occupational therapist comes once a week and they are even talking about getting me a walk-in shower, which will be brilliant,” she adds.

For daughter Lisa Warren, who lives in nearby Hackney, the care has been an eye-opener. She says: “I thought my mum would be stuck in hospital for weeks.

“The reablement team has been supporting her to be independent. They are talking about fitting a wet room and they have given her a tray on wheels, so she can make herself cups of tea etc. I was worried that she would get six weeks of care and that would be it. But the support has been ongoing. Carers come in and the team has extended the help for her while they sort out a care package. We were worried about how she would cope, but she is just really happy to be back home with her dog, Toffee.”

Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com.

If you’re looking for a social care job or need to recruit staff, visit Guardian Jobs.

Hospital to home: people’s needs must be central to transfers of care | Paul Burstow

When moving between hospitals, home and care homes, it can be harmful to those receiving care if the process is poorly managed. Quite simply, time is muscle. In as little as 12 hours, an older person admitted to hospital can lose the ability and confidence to stand unaided. Once lost, that muscle and confidence is hard to recover.

Following a 2015 review by NHS Providers into transfers of care, which I chaired, it was concluded that “there is no simple solution to delays in transfers of care: no one individual to blame nor a magic bullet that will solve everything”.

Getting these moves – these transfers of care – right can make a huge difference. When it comes to moving someone between a hospital and home, especially a care home, their needs should be paramount. That might sound daunting but often it’s the small details that make a difference.

One solution is intermediate care and there is good evidence that it could play a bigger part in helping people regain their strength. After it was identified that delayed transfers of care were causing older people to stay in a hospital bed longer than necessary, a “stabilise and make safe” scheme in Trafford, Greater Manchester, has seen 70% of people achieving full independence and a £7.78 return on investment for every £1 spent.

Andrea Sutcliffe, chief inspector for social care at the Care Quality Commission, says that small, practical solutions can be important. She suggests matching people with members of staff who share a common interest, giving the example of attending a pub quiz together. This can make life more interesting for everyone, rather than merely concentrating on individual tasks.

But small things can be complex to get right; registered managers of care homes and homecare services play a key role and can be the difference between a good or poor transfer.

So much has been written on transfers of care that it is sometimes hard to see the wood for the trees. This is why the Social Care Institute for Excellence (Scie) has produced a quick guide for registered managers, based on detailed guidelines from the National Institute for Health and Care Excellence.

The guide offers a practical overview of what registered managers and their teams need to do before, during and after a hospital stay. When someone has to go to hospital, managers and their teams can make sure the hospital has their care plans, details of any preferred routines or communication and accessibility needs, and any medication the patient is taking.

The key question they should be asking themselves is: how do we help this person get back to where they want to be?

One good answer to that question is NHS Sutton’s Red Bag Scheme; a simple innovation that makes sure someone takes and brings back everything they need when admitted to hospital, from their medication to details of current care. Developed by Sutton Homes of Care Vanguard in Surrey, the scheme allows ambulance and hospital staff to determine the treatment a resident needs more effectively. When patients are ready to go home, a copy of their discharge summary is placed in the red bag so that care home staff have access to this important and updated information when their residents return.

Moving to and from hospitals and the community is one of a series of quick guides to meet the needs of busy frontline health and social care professionals, while others address such issues as recognising and preventing delirium, and planning for children and young people transitioning to adult services.

It’s easy to assume that hospital transfers are solely about avoiding unnecessary admissions. This is an important component, but it’s crucial to remember the whole journey – from a community setting, to hospital, and back again. Registered managers and their teams have an important role to play and if time is muscle, much can be done in an efficient manner to make sure people’s experiences and outcomes are improved.

Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at socialcare@theguardian.com.

If you’re looking for a social care job or need to recruit staff, visit Guardian Jobs.

‘It’s like being reborn’: inside the care home opening its doors to toddlers

A crescendo of nursery rhymes is not what you’d expect to hear in an care home for older people, but arriving at Nightingale House in south London, you can hear the children before you can see them.

“Isn’t it fantastic? It’s the highlight of my week,” says 89-year-old Fay Garcia, while bouncing baby Sasha on her knee. “It’s like being reborn.”

Garcia never had children but is one of the regulars at the baby and toddler group. It’s been running since January in preparation for the new nursery, which opened this week.

The Apples and Honey Nightingale nursery, run by founder Judith Ish-Horowicz, is the first of its kind in the UK. The concept of intergenerational care began in 1976 when a nursery school and a care home were combined in Tokyo. Since then, there have been successful schemes across Europe, Australia and the US. In Singapore, the government has committed £1.7bn to initiatives to improve ageing in the country, including 10 new intergenerational housing developments.

Combining care for older and young people has economic benefits for care homes, and health benefits for their residents.


Combining care for older and young people has economic benefits for care homes, and health benefits for their residents. Photograph: Barbara Evripidou/Channel 4

The UK is still catching up with the idea, says Stephen Burke, director of United for All Ages. For seven years, the development agency has worked with a range of organisations – including local authorities, housing providers, care homes and community centres – to encourage them to think more broadly about opportunities for combining care.

Interest is growing. Burke expects the UK’s first housing development for students and older residents (as seen in the Netherlands) to launch soon, and representatives from Torbay council in Devon will travel to the US this autumn to see examples of best practice. Nurseries are run near to care homes in cities such as Chichester and Edinburgh, but Apples and Honey is the first to run a nursery within a care home itself, with joint activities for the children and residents including exercising, reading, cooking and eating meals.

“[It’s] about bringing people together,” says Burke. “By getting people talking to each other, you break down some of the barriers and challenge some of the stereotypes [particularly around ageism, dementia and other conditions affecting older people]. We see this having benefits for all generations.”

Ish-Horowicz came up with the idea many years ago after bringing children from her first nursery in Wimbledon to visit Nightingale House each term. The new nursery, housed in the care home’s refurbished maintenance block, has 30 places for two- to four-year-olds and a number of spots reserved for the children of care home staff.

“Everyone I’ve spoken to loves the idea,” says Ish-Horowicz. The Ofsted registration process went smoothly, although there were issues finding insurance: “We had to explain to them that we weren’t going to leave the children in the care of the residents (or the other way around), and they didn’t all need to be DBS checked,” she says.

Ish-Horowicz’s proposal came when the home was reassessing its own approach to care, says Simon Pedzisi, director of care services at Nightingale House, who had consulted students of medicine, occupational therapy and nursing for new ideas.

“Our average age on admission is 90, so we have to think in an innovative way about activities,” says Pedzisi. “[Care] has to be more meaningful, deeper and measurable. It’s about social interaction because that’s what older people really [need].”

In Channel 4’s Old People’s Homes for 4 Year Olds, residents of Bristol-based St Monica Trust were found to have improved mood, mobility and memory after spending six weeks with children.


In Channel 4’s Old People’s Homes for 4 Year Olds, residents of Bristol-based St Monica Trust were found to have improved mood, mobility and memory after spending six weeks with children. Photograph: Barbara Evripidou/Channel 4

When care for older people faces staff shortages, funding cuts and estimates that another 71,000 care home places will be needed by 2025, it’s understandable that innovation is in short supply. But Pedzisi insists that any extra money needed to support the nursery will be well spent.

There can be economic benefits for care homes considering sharing their sites, says Burke, including gaining additional rent and sharing administrative, ground maintenance and catering costs. Co-location can also improve recruitment and retention of staff, who take advantage of flexible on-site childcare or find satisfaction in the increased variety in their roles.


It’s about learning through generations and caring about each other. This kind of thing can change the community

Judith Ish-Horowicz

The health benefits of alleviating residents’ social isolation may also lead to savings elsewhere. “If people are well stimulated and live meaningful lives, they’re going to eat well. They’re then at less risk of dehydration and falling, therefore you’ll lower the risk of hospital admission,” says Pedzisi.

Increased social interaction is linked to a reduced risk of disease in elderly people, which was recently highlighted in Channel 4’s Old People’s Homes for 4 Year Olds documentary. Eleven residents of Bristol-based St Monica Trust were found to have improved moods, mobility and memory after spending six weeks with children. The trust has since committed to adding a full-time nursery to one of its residential care homes, playgrounds at a number of other sites, and is developing a new retirement village.

“We’ve always done intergenerational activities, but we wanted evidence so we could roll out wider programmes,” says David Williams, the trust’s chief executive. “It has created a buzz and a feeling that we can do things differently. It’s also had an impact on our staff. If you’re working in an organisation you feel is [making a difference], you want to be part of that innovation.”

As Apples and Honey Nightingale welcomes its first class of nursery children, Ish-Horowicz is optimistic for the future of intergenerational care. “There’s such a positive feel around this; you know it’s going to work,” she says. “It’s about learning through generations and caring about each other. This kind of thing can change society and the community.”

Join the Social Care Network for comment, analysis and job opportunities direct to your inbox. Follow us @GdnSocialCare and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to socialcare@theguardian.com.

If you’re looking for a social care job or need to recruit staff, visit Guardian Jobs.

The UK’s hidden shame: disabled people trapped at home with no wheelchair | Frances Ryan

Barely a week after London proudly hosted disabled athletes from around the world, it’s emerged that our own government is failing to provide its disabled citizens with something as basic as a wheelchair.

A BuzzFeed News investigation into wheelchair provision on the NHS this week found almost a quarter of people referred by GPs to wheelchair services are not being given any equipment at all. It also uncovered an extreme “postcode lottery”: in some parts of the UK, disabled people are provided with the right chair, but in others, three-quarters of those referred are offered nothing by wheelchair services. On top of this, it confirmed there are huge delays in disabled people getting help: 96% of areas are missing their target to supply all wheelchairs within the 18 weeks guaranteed by the NHS constitution. That’s paraplegics stuck in bed as they wait for a wheelchair, and disabled children left using unsafe equipment.

This is a scandal that’s largely been hidden from the public eye. Unlike other health services, there’s long been a stark lack of transparency and accountability when it comes to wheelchairs on the NHS: there aren’t national eligibility criteria for receiving mobility equipment – which only encourages that postcode lottery – and until 2015 there was no centrally gathered data on wheelchair services across the country. Anecdotally, as public service cuts have deepened, disabled people are reporting that it is increasingly hard to access a wheelchair on the NHS.

Over the past year, readers have told me about how – rejected by NHS wheelchair services – they’ve incurred permanent injuries after being forced to buy a cheap chair off the internet, or become housebound because, with no way to afford a wheelchair, they physically can’t get outside. This is the definition of a nation’s hidden shame: disabled people literally trapped behind closed doors.

Press further into the story and you find that even when it appears disabled people are being helped, the system is often still leaving them stranded. Some clinical commissioning groups (CCGs) – the local GP-led services that determine the policy and budgets for wheelchairs – will only provide a basic wheelchair, rather than one that’s suitable and safe for an individual’s disability (when it comes to wheelchairs, one size does not fit all). Other CCGs offer vouchers towards a better chair, but many don’t, or will only do this for certain brands of chair.

This all adds up to thousands of families being expected to find anything between £2,000 and £25,000 themselves for a wheelchair. That would be impossible for most people, but it’s particularly grim to ask it of people with disabilities or ill health. Disabled people are more likely to be in poverty than the general population, and at the same time are already dealing with extortionate living costs (the disability charity Scope found in 2014 that disabled people pay on average £550 extra a month).

Last month, I reported how wheelchair users, rejected by the NHS and with no way to afford one themselves, are resorting to crowdfunding for a wheelchair; in essence, begging the public for help that the state won’t provide. This return to charity is creeping into wheelchair provision. When I applied to my local wheelchair services for help for an electric wheelchair last year, I was told that the waiting list was between three and five years to get one on the NHS. I could get a different one within a year to 18 months, apparently, but it wouldn’t be suitable for going outside. Vouchers weren’t even offered. Instead, I was given leaflets for local disability charities.


The idea that wheelchairs are a discretionary service points to a cultural prejudice around disability

Being advised to go to charity, no matter how kindly, feels particularly disturbing if you’re disabled – a group historically forced to go “cap in hand” to survive – but it should worry anyone who believes in taxation and a comprehensive safety net. Whether one of the richest nations in the world can provide severely disabled people with a safe and suitable wheelchair goes to the very centre of the questions about the welfare state.

The response in some quarters is that the NHS is a finite resource – the implication being that there’s limited money to go around, and that, if we were to rank essential health needs, wheelchairs would not meet the criteria. But this is flawed on both counts. The idea that wheelchairs are a discretionary service points to a cultural prejudice around disability. It’s hard to imagine any other group being expected to exist without the healthcare that enables them to function as part of ordinary society – and it is exactly the same mentality that’s behind the vast cuts that are curtailing disabled people’s independence. Besides, to talk of what the NHS can “afford” for disabled people only supports the myth that public services struggle because of the individual rather than a government choosing not to sufficiently fund them.

As the evidence around the country’s dire wheelchair provision becomes clear, the pressure needs to mount on each local service to provide disabled people with the support they need. As we speak, there are countless families being turned down by the NHS for the most fundamental support. A system that fails to provide disabled citizens with a wheelchair is the antithesis of the welfare state; it is abandoning the very people most in need.

Frances Ryan writes the Guardian’s Hardworking Britain series

The UK’s hidden shame: disabled people trapped at home with no wheelchair | Frances Ryan

Barely a week after London proudly hosted disabled athletes from around the world, it’s emerged that our own government is failing to provide its disabled citizens with something as basic as a wheelchair.

A BuzzFeed News investigation into wheelchair provision on the NHS this week found almost a quarter of people referred by GPs to wheelchair services are not being given any equipment at all. It also uncovered an extreme “postcode lottery”: in some parts of the UK, disabled people are provided with the right chair, but in others, three-quarters of those referred are offered nothing by wheelchair services. On top of this, it confirmed there are huge delays in disabled people getting help: 96% of areas are missing their target to supply all wheelchairs within the 18 weeks guaranteed by the NHS constitution. That’s paraplegics stuck in bed as they wait for a wheelchair, and disabled children left using unsafe equipment.

This is a scandal that’s largely been hidden from the public eye. Unlike other health services, there’s long been a stark lack of transparency and accountability when it comes to wheelchairs on the NHS: there aren’t national eligibility criteria for receiving mobility equipment – which only encourages that postcode lottery – and until 2015 there was no centrally gathered data on wheelchair services across the country. Anecdotally, as public service cuts have deepened, disabled people are reporting that it is increasingly hard to access a wheelchair on the NHS.

Over the past year, readers have told me about how – rejected by NHS wheelchair services – they’ve incurred permanent injuries after being forced to buy a cheap chair off the internet, or become housebound because, with no way to afford a wheelchair, they physically can’t get outside. This is the definition of a nation’s hidden shame: disabled people literally trapped behind closed doors.

Press further into the story and you find that even when it appears disabled people are being helped, the system is often still leaving them stranded. Some clinical commissioning groups (CCGs) – the local GP-led services that determine the policy and budgets for wheelchairs – will only provide a basic wheelchair, rather than one that’s suitable and safe for an individual’s disability (when it comes to wheelchairs, one size does not fit all). Other CCGs offer vouchers towards a better chair, but many don’t, or will only do this for certain brands of chair.

This all adds up to thousands of families being expected to find anything between £2,000 and £25,000 themselves for a wheelchair. That would be impossible for most people, but it’s particularly grim to ask it of people with disabilities or ill health. Disabled people are more likely to be in poverty than the general population, and at the same time are already dealing with extortionate living costs (the disability charity Scope found in 2014 that disabled people pay on average £550 extra a month).

Last month, I reported how wheelchair users, rejected by the NHS and with no way to afford one themselves, are resorting to crowdfunding for a wheelchair; in essence, begging the public for help that the state won’t provide. This return to charity is creeping into wheelchair provision. When I applied to my local wheelchair services for help for an electric wheelchair last year, I was told that the waiting list was between three and five years to get one on the NHS. I could get a different one within a year to 18 months, apparently, but it wouldn’t be suitable for going outside. Vouchers weren’t even offered. Instead, I was given leaflets for local disability charities.


The idea that wheelchairs are a discretionary service points to a cultural prejudice around disability

Being advised to go to charity, no matter how kindly, feels particularly disturbing if you’re disabled – a group historically forced to go “cap in hand” to survive – but it should worry anyone who believes in taxation and a comprehensive safety net. Whether one of the richest nations in the world can provide severely disabled people with a safe and suitable wheelchair goes to the very centre of the questions about the welfare state.

The response in some quarters is that the NHS is a finite resource – the implication being that there’s limited money to go around, and that, if we were to rank essential health needs, wheelchairs would not meet the criteria. But this is flawed on both counts. The idea that wheelchairs are a discretionary service points to a cultural prejudice around disability. It’s hard to imagine any other group being expected to exist without the healthcare that enables them to function as part of ordinary society – and it is exactly the same mentality that’s behind the vast cuts that are curtailing disabled people’s independence. Besides, to talk of what the NHS can “afford” for disabled people only supports the myth that public services struggle because of the individual rather than a government choosing not to sufficiently fund them.

As the evidence around the country’s dire wheelchair provision becomes clear, the pressure needs to mount on each local service to provide disabled people with the support they need. As we speak, there are countless families being turned down by the NHS for the most fundamental support. A system that fails to provide disabled citizens with a wheelchair is the antithesis of the welfare state; it is abandoning the very people most in need.

Frances Ryan writes the Guardian’s Hardworking Britain series