The ‘accessible queue’ for the Queen ‘was discriminatory and a shambles’
Disabled people who struggled for hours to queue to pay their respects to the Queen at the lying-in-state in Westminster Hall say the government treated them as an “afterthought” and that its “discriminatory” arrangements were “a shambles”.
Many disabled people travelled from across the country to reach the Tate Britain art gallery in central London, where they queued for hours for a wristband that only allowed them to join the “accessible queue” to view the Queen’s coffin hours later, and sometimes not until the following day.
By the weekend, disabled people were reporting having to queue for up to eight hours just to obtain a wristband.
They then faced another wait before they could join the accessible queue to enter Westminster Hall at the allocated time.
There was also anger and frustration when the accessible queue was closed permanently at 4.30pm on Saturday, more than a day before the main queue was closed to new arrivals on Sunday evening.
The arrangements meant many disabled people had to wait longer than the non-disabled people who were waiting to pay their respects in the main queue that started miles away on the other side of the Thames.
The Department for Digital, Culture, Media and Sport (DCMS), the government department responsible for organising the accessible queue, was also heavily criticised for the quality of information it provided.
Disabled people highlighted its failure to publicise the locations of a first aid point at Tate Britain and a building where disabled people were able to leave their bags and wait for their time slots.
Most of the useful information that did emerge was crowd-sourced and provided by a disabled person who set up the @AccessibleQ Twitter account.
DCMS is now facing questions over why the accessible queue appeared to have been an afterthought, when it is believed that years of planning went into the Queen’s funeral.
Many disabled people who tried to access the lying-in-state said the arrangements made for the accessible queue demonstrated the daily discrimination disabled people face, although many also praised the support offered by volunteers and members of the armed services to those who were queuing.
Sonay Erten, who travelled with her husband from south-east London, said the government’s arrangements were “definitely discriminatory” and that disabled people had clearly been “just an afterthought”.
She told Disability News Service (DNS): “The accessible queue was not accessible at all.
“The government website promised toilets, quiet spaces and a route for those who don’t queue for long periods.
“I have autism and ADHD, so without that support I would’ve missed out. That is not what was provided.”
She and her husband arrived at about noon on Saturday, but did not receive their wristbands until 6pm, and finally arrived at the lying-in-state at about 11.30pm.
She said: “We queued for six hours, they ran out of chairs, there was no water apart from a 250ml bottle at the start, no toilets and no information.
“I was exhausted and burned out and about five hours in managed to find a chair in a shaded area to calm myself down a bit.
“There was no [online] tracker, no information provided [about waiting-times]. No consideration of different disabilities.
“I will never forget the scene of people with mobility issues squeezed into some steps as we got to Tate Britain, absolutely exhausted.
“As I didn’t have mobility issues, I felt the need to support those with mobility issues around me: carrying a chair for them and telling them to sit down instead of me. That made me even more exhausted.”
But she added: “Whilst the whole journey was exhausting, it was absolutely worth it.
“Although I’m not sure I’d do it again, I feel so privileged to have been able to visit the Queen lying-in-state.”
Her husband, James Carter, told DNS that the arrangements made by DCMS were “an absolute shambles”, with just four people handing out wristbands to a queue of thousands.
He said many people had to perch in bus stops or even sit on the ground because there were so few chairs available in the queue for the wristbands.
The portable toilets outside Tate Britain were closed because they had been soiled and then not cleaned, there were no quiet spaces for those who were neurodiverse – as both he and his wife are – and the information provided by volunteers “was sketchy at best”.
He said he believed the decision to close the accessible queue a day earlier than the main queue was “discrimination”.
He said: “The whole thing was a mess from start to finish. DCMS treated the whole thing like an afterthought without any real consideration of the diverse needs that people have.”
Disabled lecturer Dr Julia Ouzia, in a detailed blog, listed multiple concerns she noted when she attended the lying-in-state via the accessible queue on Saturday, although she was another who praised the work of the volunteers.
Among her concerns were the “lacklustre” communications from DCMS, its failure to estimate queue length and waiting-times, the “basically non existent” accessible toilets along the route, and the decision to close the accessible queue permanently more than 24 hours before the main queue.
Jade, an occupational therapist, had been repeatedly told by DCMS in advance that she would need to join the main queue, as she was not a wheelchair-user, even though one of her health conditions means she can pass out if standing too long in a static position.
She drove to London, but by the time she arrived at Tate Britain she was told the accessible queue had closed for the day and she would need to return the next day.
She told DNS: “I don’t know how they expected disabled people and carers to just pop back home and come back again, using all their energy, being in pain and managing fatigue levels.
“I was also advised at that point that the main queue was still open and had many provisions – plenty of food, toilets and water points.
“In essence, disabled people were being told to go home as they couldn’t be catered for and non-disabled individuals were okay to carry on through the queue.”
She added: “I’ve never felt so disabled and such a lesser individual in society. I felt like I had come up to a massive brick wall that I couldn’t get around.”
Another disabled woman who contacted DNS said she had travelled from Brighton and arrived at 11pm on Thursday, expecting a slot two or three hours later, only to be given a time for between 3pm and 4pm the following day, 16 hours later.
She said: “It’s an absolute disgrace. Other people in the queue were as horrified, as they too were under the same impression.
“Some people had travelled long distances and were faced with having to drive back home and then decide whether or not they would come back tomorrow, and it sounded like many were choosing not to.”
Others spoke on Twitter of the organisational “shambles”, with one reporting how they arrived at 1pm on Saturday, queued for nearly seven hours and were then given a slot of 2-3am the next morning.
Another of those who survived the ordeal described on Twitter how they had to sit on the pavement or lean against walls because of the lengthy walk between Tate Britain and the Houses of Parliament to reach the entrance to the lying-in-state.
They said: “Anybody who meets mobility criteria for PIP/DLA on physical grounds couldn’t walk it without pain.
“Surely an accessible queue should be accessible to people who meet the criteria of disability benefits that the state uses to define the threshold for disabling mobility difficulties?”
A disabled Jewish woman said she had been offline for 24 hours because she was marking the Sabbath and had arranged for her daughter to support her to attend the lying-in-state the following day, only to discover the accessible queue had closed early.
Sally Lester, from Stratford-upon-Avon in Warwickshire, who has invisible impairments including long Covid, had researched the queue, travel arrangements and the information provided by DCMS before deciding to catch a train to London on Friday.
She arrived about 4pm and waited in the queue for an hour, receiving “various messages” about waiting-times from police officers and volunteers, before being told it was closing until the next day.
She said: “I was going up and down the queue trying to get some information.”
She was eventually told the earliest slot available was for 2am the next morning, and she decided she was not equipped for staying overnight.
Lester said she believed the failures, particularly in providing accurate information about the accessible queue and the lack of planning, were discriminatory.
She visited Green Park to view the flowers that had been left to honour the Queen, and to lay a wreath she had made herself, and then returned to Warwickshire on the train without attending the lying-in-state.
She said: “I was disappointed and upset. It would have been a most extraordinary honour to be able to bow before her coffin, but I came home and curtsied in front of the television instead.”
Lester said there was a marked contrast between the faultless organisation of the Queen’s state funeral and the way the accessible queue had been run.
She said: “They have had years to prepare for this. It was an afterthought and that’s not good enough in 2022.”
Kamran Mallick, chief executive of Disability Rights UK, said the decision to close the accessible queue more than a day before the main queue was “potentially punitive” and felt like “a lack of equitable planning”, particularly as many disabled people would have paid personal assistants to support them on the journey, without realising the accessible queue would be closed by the time they arrived.
He said: “To waste a journey as a non-disabled person is a waste of time and money, and an inconvenience.
“To waste a journey as a disabled person is to expend time, money, energy we may barely have and often [experience] physical pain, for no outcome.”
He said the information released about the queue by the government was “inaccurate from the start, and the situation has gone from bad to worse”.
He added: “The government must embed qualified access professionals within its ceremonial departments to ensure that future events of this magnitude do not turn into such a disappointment and fiasco for disabled people.”
Some disabled people did report good experiences in the accessible queue, particularly those who arrived near the start of the lying-in-state period.
Access campaigner Sam Jennings, who attended last Thursday, said she found the queue “perfectly accessible and very well mapped out”.
She arrived at Tate Britain at 10.30am and was given a wristband for the 11am-noon slot.
At that stage, she said, there were people from the armed services on hand to help, offering wheelchairs for those who needed them, while chairs were placed near the queue, umbrellas were available if needed, and water was being handed out.
She told DNS: “We went to the actual queue with our wristbands just after 11 and went in at 12.45pm.”
She said it was “wonderfully planned and thought-through”, although she accepted that the queue had obviously become busier later in the week.
The BBC’s security correspondent, Frank Gardner, a wheelchair-user, described his seven-hour wait in the accessible queue as “well worth it”.
He said on Twitter that that there was a “huge sense of togetherness” in the queue, something other disabled people had also reported, although he also pointed out that there had been “mixed messages” from officials about the availability of wristbands.
He appears to have had to leave the queue on Friday and then return the next day, when he eventually secured a wristband.
After he had paid his respects in Westminster Hall on Saturday, he tweeted: “I know this might sound like a bit of a cliche but filing past the Lying in State in a hushed Westminster Hall yesterday you really did feel like a part of history.”
The Department for Digital, Culture, Media and Sport (DCMS) declined to say if it would carry out an inquiry into its failures; whether it accepted that disabled people were forced to wait too long in the accessible queue; and if it accepted that the arrangements for the accessible queue failed to meet the government’s duties under the Equality Act.
It also declined to say how many people accessed the lying-in-state through the main queue and the accessible queue; and when DCMS had started planning the accessible queue.
But a DCMS spokesperson said in a statement: “We wanted as many people as possible to be able to pay their respects to Her Majesty the Queen and worked round the clock to facilitate it.
“This is the first time we had an accessible queue for lying-in-state, and it was for people with a disability or long-term condition which meant they were unable to queue for an extended period of time.
“To ensure that accessibility requirements are properly catered for, we worked with expert advisory groups and relevant charities throughout the planning process.
“Wristbands were given out for time slots in advance in order to reduce the time physically waiting in line.
“The accessible queue was closed on Saturday to new entrants once it was assessed that capacity had been reached.
“Decisions in relation to the queue closure were made in conjunction with partners, including the Metropolitan police, with safety and security paramount.”
22 September 2022
Rail ticket office closures mean ‘one last chance to stop mass discrimination’
Disabled campaigners have raised fresh fears for the future of accessible rail travel, after reports that the government plans to close most train station ticket offices as part of a continuing programme of cuts.
A national newspaper reported on Sunday that the government’s reforms are likely to see about four-fifths of ticket offices closing.
The report came as new figures secured by Disability News Service (DNS) reveal a huge increase in the number of times that staffing problems are causing lifts to be closed and step-free access to be suspended across the London Underground network (see separate story).
The rail industry already faces concerns about an “escalating human rights crisis” for disabled passengers, caused by staffing issues across the rail network.
Last month, campaigners led by the Association of British Commuters (ABC) called on the Equality and Human Rights Commission (EHRC) to take “urgent action” on railway staffing.
EHRC warned three years ago that the move towards running more trains without a member of customer services staff on board – driver-only operated trains – and an increase in unstaffed stations, as well as the need for many disabled rail passengers to book assistance before their journeys, could be breaching the Equality Act.
In July, ABC secured a report by the Disabled Persons Transport Advisory Committee (DPTAC), the government’s accessible transport advisers, which concluded that staffing levels on a section of the rail network run by the UK’s largest rail operator – Govia Thameslink Railway (GTR) – were “completely inadequate to deliver an accessible railway”.
And earlier this month, a leaked document obtained by ABC showed GTR had admitted breaching access laws for more than 10 years across large parts of its network.
Now The Sunday Telegraph has reported that 25 of 30 East Midlands Railway ticket offices will be closed under a new contract, with this understood to be “broadly in line” with the government’s plans for the rest of the rail network.
ABC believes its research shows that closing ticket offices, combined with ongoing secret government discussions with the rail industry, will leave train companies free to reduce staffing at will.
Doug Paulley, a prominent disabled campaigner on accessible transport, also believes that closing ticket offices will mean cuts to station staff.
He said the Sunday Telegraph report confirmed the government’s plans to de-staff the railways, both in stations and on trains, which would make the railways “more hostile towards disabled people”.
He said: “This isn’t just about selling tickets. On many stations it means removing the only staff on the station.
“These staff make sure toilets are open and usable and heated waiting-rooms remain open.
“They answer queries and communicate with other staff to coordinate assistance or provide accessibility information. They are essential for security and safety.”
Paulley said he supported the RMT union’s “Staff Our Stations” campaign “100 per cent” and would return to the picket lines to support it.
He said the frequent combination of unstaffed stations and trains where the only member of staff is the driver make for a “particularly toxic combination”, which means there is “quite literally nobody present to assist disabled people to use trains”.
He said: “There’s no getting round it: actual staff, present bodily on trains and stations, are absolutely essential to disabled people’s ability to travel, reliably, safely and in comfort, as everybody else does and as is our right.”
Emily Yates, ABC’s co-founder, said she was “truly appalled” by the failure of regulators and advisory bodies to speak up on the de-staffing concerns and the potential impact on disabled passengers.
She said: “The Office of Rail and Road has been condoning unlawful staffing arrangements on GTR and at least four other franchises for more than a decade – with no adequate plan or deadline to correct this.
“DPTAC has been warning privately that rail de-staffing policies are ‘toxic’ and ‘illegal’ since 2016; however, it has failed to this day to make a single public statement.
“Even the EHRC has not responded to our urgent call for intervention, refusing since mid-August to give so much as a message of reassurance to disabled people, despite the obvious, widespread anxiety about railway de-staffing.”
She added: “This really is our last chance to stop an historic act of mass discrimination.
“Any organisation still staying silent about this matter will be fully complicit in the betrayal of disabled people’s right to independent living.”
Paula Peters, a member of the national steering group of Disabled People Against Cuts, said the closure of so many rail ticket offices would have a “horrendous impact on disabled people’s lives”.
She said: “Ticket offices are a vital lifeline for disabled people to travel; ticket office staff provide a variety of services, from supporting disabled people with journey planning to best deals on ticket prices and support with accessing the station.
“We feel safe knowing ticket office staff are there to assist and stations staffed.
“Many disabled people have access needs where smart phone technology and apps are not accessible to them.
“Ticket machines are very complicated to use with small screens and disabled people who are visually impaired or with a learning impairment cannot access them without support. Often ticket machines are vandalised.”
She also pointed to union reports of cuts to trained “safety critical” staff, and their replacement with agency staff without the same safety critical training, which she said would put disabled people’s safety at risk, both within the station and when boarding and leaving the train, and “could lead to serious injury or accidents”.
She said: “Critically safety trained staff provide vital support with wheelchair ramps, support with information and navigating the rail station.
“This will have a catastrophic impact on the right to ride and will marginalise and isolate disabled people even further from being able to live our lives.”
She said DPAC would accept nothing less than a rail network that was fully staffed with safety critical-trained staff, with ticket offices “kept open so that disabled people have the right to ride and be able to participate in society”.
An EHRC spokesperson said the watchdog was continuing its dialogue with campaigners and its consideration of evidence, and that the concerns were “still under consideration”.
The Department for Transport (DfT) said the proportion of train tickets bought in ticket offices had fallen from 34 per cent in 2012-13 to 12 per cent in 2021-22, with about two-thirds (68 per cent) of all National Rail tickets now bought online or through contactless payments.
DfT declined to say if ticket office closures would inevitably lead to some staffing cuts across the network; what action it would take to address the “escalating human rights crisis” on the railways; and whether it accepted that ticket office closures would lead to a significant negative impact on accessibility – and discrimination – for many disabled passengers.
But a DfT spokesperson said: “No final decision has been taken on ticket offices.
“Station staff are vital for passengers’ safety and passengers will always benefit from face-to-face assistance at train stations.
“The reality is ticket offices have seen a significant decline in use over the last decade, and by making station staff more adaptable we will have a better railway for passengers and taxpayers.”
22 September 2022
NHS trusts are still using harmful mental health practices, secret reviews show
Reviews carried out by NHS trusts across England into a mental health scheme branded unethical, unlawful and unsafe raised multiple concerns about its use, documents obtained by Disability News Service (DNS) have revealed.
The reviews also show that many of the trusts have continued with practices that campaigners have described as “harmful” and “inappropriate”.
The reviews were ordered last year after mounting concerns raised by disabled campaigners and allies about the use of the Serenity Integrated Mentoring (SIM) system, and its rollout across the NHS in England, despite the lack of quality research into its impact on service-users.
It appears that SIM was implemented in almost half of the mental health trusts across England.
The reviews suggest that although most – if not all – SIM schemes have now been abandoned, similar programmes are still widespread across NHS England.
Campaigning by the StopSIM coalition led to NHS England’s national clinical director for mental health, Tim Kendall, writing to mental health trusts last year to call on them to review their use of the SIM scheme.
Although those reviews appear to have been completed last autumn, NHS England (NHSE) repeatedly ignored attempts by DNS to obtain them under freedom of information laws.
NHSE has now finally released the reviews to DNS, and they reveal how many trusts appear to have accepted that the SIM system was flawed.
Several of the reviews suggest that many trusts accepted that the way SIM used police officers was inappropriate, and that procedures for ensuring patients’ consent to share their information among agencies was flawed.
But StopSIM is concerned that the changes made by trusts after the reviews “do not go nearly far enough”.
The coalition had described SIM last year as an “unacceptable step backwards in disability justice” which effectively criminalised mental distress.
It said that SIM and SIM-type schemes put pressure on users of mental health services – often those at high risk of suicide and self-harm – who had not committed a crime but were seen as “high intensity users” of emergency services.
Despite being at very high risk of self-harm or suicide, individuals under SIM could be prevented from accessing potentially life-saving treatment from ambulance services, accident and emergency departments, mental health crisis services, community mental health teams and the police.
SIM also gave police officers a key role in making clinical decisions when service-users were in crisis, and – said the coalition – was “heavily reliant” on their “coercive” powers to enforce “behavioural management”.
Most of the SIM schemes – and possibly all of them – have now been closed, according to the reviews, but it appears that many trusts have altered aspects of how they operated, before relaunching them under new names.
A StopSIM spokesperson said: “Although a number of trusts stated that they were making changes to the SIM model, such as changing the name and branding, in most areas these changes do not go nearly far enough.
“The majority of these trusts intend to continue with key harmful practices associated with SIM, including the inappropriate involvement of police in routine community mental health care, behavioural contracts and the use of sanctions for patients who self-harm or engage in suicidal behaviour.”
Many trusts tried to justify some of the controversial aspects of SIM and SIM-type schemes in their reviews.
One, in response to an NHSE question about whether the trust sought to “reduce use of care” through sanctions, appeared to accept that it had adopted a “conditional” approach to care, which “could be perceived” by service-users as “coercive”.
Another review by a trust spoke of changing the name of its scheme “because the SIM branding is harmful to patient perception of the model and to the organisations involved”.
Several schemes admitted that police officers were providing mental health support to service-users, with one stating that although officers do not “undertake scheduled healthcare… they are involved in ongoing support/discussions” with service-users.
Another review admitted that, although police officers were not “specifically involved in the Mental Care of the patient… it could be said that at times there was a blurring of roles”.
One trust from the north of England described how it turned down funding offered by NHSE to take part in the SIM scheme “due to concerns we had, along with our Police partners around the ethos and governance of the project”, and that “we did not want to involve the Police in anyone’s care and treatment unnecessarily”.
A trust in the north-west stated that it “did not implement the SIM model due to concerns raised by our police partners”.
And another review described how a meeting between two trusts had concluded that “the SIM approach and guidance about patient consent not being needed for information sharing between partner organisations… was flawed and was not an acceptable way forward”.
One email released by NHSE, from the London region’s mental health team at NHSE and NHS Improvement, spoke of the “lack of evidence” for the SIM approach.
One review from three London mental health trusts made a series of recommendations for future multi-agency working, including ensuring that any future schemes “should be co-produced with service user and carer representatives”, and stressing the need for “transparent processes for discussing, recording and reviewing the consent of the patient to share information”.
The reviews also include a paper from Isle of Wight NHS Trust, where the original SIM model was developed in 2015 but then abandoned in 2017 following concerns from Hampshire police “about the way some of the data had been recorded, and its accuracy”.
The trust stressed in its paper that its current arrangements “do not follow the SIM model, and do not include any of the features of SIM that have raised concerns”.
An NHSE spokesperson told DNS this week that any approach “that seeks to punish, coerce, or withhold care from patients who are experiencing distress is deeply unethical”.
He said: “The NHS is grateful to StopSIM coalition for highlighting these concerns and the full response will be published in the coming weeks, following significant input from a range of stakeholders.”
A StopSIM spokesperson added: “The disparity in feedback from trusts demonstrates the need for a national position to put an end to these coercive and punitive practices, and remind trusts of their responsibilities in line with the NHS constitution, NICE* guidelines and existing equality and human rights legislation.
“We hope our forthcoming position statement with NHS England will put an end to these practices and ensure that patients who have been, or still are being, harmed by SIM receive appropriate care.
“We are also working with regulatory and professional bodies to create this position statement, to ensure that SIM and the practices associated with this model do not re-emerge in the future.”
*National Institute for Health and Care Excellence
22 September 2022
Underground staff problems cause ‘unacceptable’ rise in step-free suspensions
New figures have revealed a huge increase in the number of times that staffing problems are causing lifts to be closed and step-free access suspended across London’s tube network.
The figures, secured by Disability News Service (DNS) through a freedom of information request, show that – even before the pandemic – the number of incidents where step-free access had to be suspended because of staff shortages was on a steep rise.
The numbers grew even more sharply through the pandemic.
But the latest figures suggest that, even though the pandemic has eased, suspension of step-free access caused by staffing issues is set to rise sharply again in 2022-23.
Disabled campaigners called this week for Transport for London (TfL) to review its staffing levels “urgently”, and they linked the concerns with reports of ticket office closures and staffing cuts across mainline rail stations (see separate story).
The TfL figures show just 20 suspensions of step-free access caused by staffing issues on London Underground in 2018-19, 88 the following year, 394 in 2020-21 – the first full year of the COVID-19 crisis – and 490 last year.
But in the first four-and-a-half months of 2022-23, there have already been 316 suspensions due to staffing problems.
The figures also suggest an increase in suspensions of step-free access caused by faulty lifts, with suspensions likely to reach 1,200 in 2022-23 if the current trend continues, compared with fewer than 1,000 in both 2018-19 and 2019-20, 578 in 2020-21 and 1,059 in 2021-22.
Katie Pennick, campaigns and communications manager for Transport for All, the disabled-led organisation that campaigns on accessible transport, said: “It is wholly unacceptable that step-free access is being suspended at stations due to a lack of staffing, and we are really concerned to see the upward trend in instances where this is happening.
“Step-free access across the London Underground is already insufficient, with only 91 out of the 272 tube stations having some degree of step-free access (and no current plans for further stations to become step free).
“There is a worrying push towards so-called modernisation, including reported plans to close ticket offices and reduce staff at mainline rail stations across the UK, as well as a clause in Transport for London’s funding deal committing them to pursue driverless trains.
“This situation makes clear the vital role that staff play in guaranteeing accessible travel.
“When staff are lacking, disabled people are locked out of the network.
“Technology and infrastructure cannot replace human interaction, especially when said infrastructure is old, unreliable, and inaccessible.
“Maintaining staffing levels is critical in order to support an accessible transport network.
“Staff provide assistance, provide information, unlock station facilities, and have a profound impact on safety and security.
“We would strongly encourage TfL to review their staffing levels urgently.”
In an email accompanying the figures, TfL suggested the increase in staff-related suspensions of step-free access was partly due to recruitment problems, pandemic-related staff sickness and annual leave taken over the summer.
TfL said: “We have unfortunately seen some recent station and lift closures in part due [to] staffing challenges with managing existing vacancies, coupled with ongoing higher absence levels as a result of the pandemic, as well as increased annual leave during the summer holiday period.
“This means that sometimes we have to close stations and/or suspend step-free access to keep other stations open.
“We place a priority on keeping step-free stations open as much as we can, but when we do not have the staffing numbers to safely do so, for example in the event of an emergency lift evacuation or for the deployment of a manual boarding ramp, we have to close the station or suspend step-free access to ensure safe operations.
“This is, of course, in addition to any mechanical fault which may mean a lift has to close.”*
TfL said that lifts receive a routine maintenance check every two weeks, a “full MOT” every six months and a partial refurbishment every five years, while they must be fully replaced every 10 to 20 years, depending on what type they are.
*TfL says that disabled passengers who need step-free access and arrive at a tube, Elizabeth line or overground station where the lift is unavailable, are helped to plan an alternative journey to their destination. If there is no reasonable alternative route, TfL will book a taxi (and pay for it) to take them to their destination or another step-free station from where they can continue their journey
22 September 2022
Conference to put disabled people at the heart of inclusive involvement debate
A ground-breaking conference in November will put disabled people at the heart of the debate on how to remove the barriers preventing service-users from being involved in planning the services they use.
It is believed to be the first time that a UK conference about inclusive involvement in services has been organised for service-users and run by a user-led organisation, and it will allow disabled people and representatives of other marginalised communities to share their experiences.
The free conference on Tuesday 1 November is being organised by Shaping Our Lives*, a disabled people’s and service-user network with more than two decades’ experience of facilitating and practising inclusive involvement across the UK.
Those speaking at the Thinking Outside the Tickbox conference in Birmingham – which will also be held online – will include representatives of Muslim, LGBTQ+, South Asian, Gypsy, Roma and Traveller communities.
They will discuss how to remove the barriers they face in having their voices heard in improving services.
User involvement in services can include patient and public involvement groups run by GP surgeries, improving the way social care is delivered locally, or even – as in Southend-on-Sea – playing a part in deciding how grant funding is distributed through a new community investment fund set up by the council.
It can also include taking part in surveys, focus groups, sharing lived experience with students, or taking part as a partner in research or co-designing a new service.
Much of the focus of the conference – which is being funded by the National Lottery’s Awards for All programme – is likely to be on involvement in health and social care services, which is where Shaping Our Lives has traditionally concentrated its work.
The conference, which will be chaired by Shaping Our Lives’ co-chair Professor Peter Beresford, will also highlight the experiences of marginalised people with intersectional backgrounds.
Speakers will include a representative of the LGBTQ+ Muslim community, a transgender mental health service-user, and disabled people from the South Asian and Traveller communities.
Becki Meakin, Shaping Our Lives’ involvement manager, said: “The most common reason people take part in user-involvement is they want to improve the experiences other people like them have of using health and/or social care services.
“They want to make it different and better for other people.”
She said many local authorities are engaging in the idea of involving service-users in their work because of the current movement towards integration of social care and health services through the new integrated care systems (ICSs), “but it doesn’t mean they are doing it very well”.
She said: “Often they don’t know how to work really well and inclusively with people and lack confidence.
“More than anything, it’s a fear of getting it wrong on things like access requirements, and when someone does ask, they are not sure how to organise access adjustments.
“There are some people with real commitment and vision on user involvement, but they are few and far between.”
Shaping Our Lives often works with health and social care organisations to support them to improve their user involvement, but Meakin said the conference will “turn that idea on its head”.
She said: “We want to build confidence and knowledge and understanding of user-involvement among individuals.
“We want to give those individuals the confidence to get involved in activities to influence health and social care service policy and delivery, but also to make them aware of the barriers and exclusion that people experience.”
Meakin said she also hopes the conference will tackle some of the “much less understood areas” of user-involvement, such as the barriers faced by Traveller communities, and involvement in policies addressing food poverty.
She also hopes there will be a lot of discussion about how multiple oppressions create intersectional barriers.
She said: “A lot of disabled people don’t get involved because they are still very much excluded because they are from a different faith or have other health conditions or they are of a certain age.
“We have got to learn to be much more thoughtful and adaptable about how we include service-users.
“It’s people organising the involvement thinking, ‘What do I need to do to include people from this particular community?’”
Shaping Our Lives has already launched My Involvement Profile, which allows disabled individuals and others to explain exactly what adjustments they need to be able to be involved equally, and it will soon launch a pilot scheme that will provide individuals with mentoring in inclusive involvement practice.
Meakin hopes these two projects, funded by the National Lottery Community Fund, and the conference, will help Shaping Our Lives promote inclusive approaches to user-involvement “from the bottom up and not just the top down”.
Attendance at the conference will be free, with some small travel bursaries available for those who need financial support with travelling to attend the event in person.
The conference will also mark the 20th anniversary of Shaping Our Lives being constituted as a non-profit-making company.
*Shaping Our Lives is a Disability News Service subscriber
This news story is part of an ongoing Disability News Service series that highlights the vital work of the UK’s disabled people’s organisations
22 September 2022
Other disability-related stories covered by mainstream media this week
Adult social care in England is in serious crisis, Tory council leaders have warned the government, as it faces a £3.7 billion funding gap and a growing staffing shortage that has brought many local care providers to the brink of collapse. The intervention by the County Councils Network, which represents 36 mainly Tory-run authorities, comes amid widespread local government concern over the increasingly fragile state of social care. Care costs have accelerated, fuelled by unexpected wage and energy inflation: https://www.theguardian.com/society/2022/sep/21/adult-social-care-in-england-is-in-crisis-say-tory-council-leaders
A health watchdog is holding a review into residential care for autistic people and those with learning difficulties, after a provider was severely criticised. The study by Healthwatch Norfolk was triggered by a review of care following deaths at the now-closed Cawston Park hospital. CCTV footage showed a dying man being struck by a staff member. The review will consult patients, families and staff going back over a 10-year period: https://www.bbc.co.uk/news/uk-england-norfolk-62973397
A bank unfairly treated a solicitor because her asthma meant she needed to work from home and have time off during the pandemic, an employment tribunal has ruled. Gulnaz Raja, a deputy company secretary at Starling, sued the bank after she was dismissed in March 2020 and was told by the bank’s general counsel that she was “not a Starling person”. She claimed she was unfairly treated because of “something arising from her disability” and that the bank had failed to hold a meeting to discuss her health and safety concerns: https://www.lawgazette.co.uk/news/asthmatic-solicitor-unfairly-treated-by-starling-bank-tribunal-rules/5113695.article
22 September 2022
News provided by John Pring at www.disabilitynewsservice.com
