News

Mandatory training for NHS staff on understanding learning disability and autism

5 November 2019

The government has confirmed that every NHS and social care worker will receive mandatory training relevant to their role. Image says training

The new training is backed by £1.4 million of government funding and will focus on:

  • understanding learning disability and autism
  • legislation and rights
  • making reasonable adjustments such as using different communication methods for autistic people with sensory sensitivities

As part of this, the government will run a series of trials next year to inform a wider roll-out of the training, which aims to improve quality of care and life expectancy.  

Work is already underway to deliver the training and testing will take place in a variety of health and social care settings to help shape how it will be rolled out and delivered in future.

The specially designed training will be named in memory of Oliver McGowan, in recognition of his family’s tireless campaigning for better training for staff. It will draw on case studies to demonstrate why it is so important.

The announcement follows a consultation process that listened to the views of over 5,000 people, including charities, patient groups, professional bodies and the public. The responses overwhelmingly backed the principle of mandatory training.

Read the easy read document What people told us about our ideas for learning disability and autism training for health and care staff. And what the Government will do next.

 

 

'Everyone working together needed to tackle loneliness in Reading'

22 October 2019

A new report on tackling loneliness in Reading calls for a change of culture across the town, Happy and sad facesincluding neighbours and communities working together to look out for people at risk of isolation.

The report, Tackling Loneliness and Social Isolation in Reading, England  which was presented to Reading Borough Council presents a picture of loneliness and social isolation in the area brought about in part by cuts to public sector services.

Tackling Loneliness saw 21 voluntary, community organisations and statutory agencies – including Reading Mencap - take part to provide their views on the issue. In addition focus groups were held with 65 members of the community including service users, volunteers and groups of people at risk or experiencing loneliness from diverse backgrounds.

The report highlights best practice in Reading, particularly focusing on how loneliness may stem from other concerns including mental health, addiction and homelessness.

It then makes recommendations for action including:

  • Greater provision of specialist support services for groups at risk of loneliness, encompassing tailored one-to-one support, as well as group activities, with increased opening hours, particularly at weekends
  • Fostering more collaborative working ‘joined-up’ thinking and signposting between organisations, Reading Borough Council and primary healthcare providers
  • Fostering good neighbourliness, supportive faith communities and community development
  • Increasing the affordability and social accessibility of transport, including through concessionary fares, building people’s confidence, supporting and raising awareness about alternative transport services for people with complex needs and carers, such as ReadiBus and neighbourhood volunteer transport initiatives
  • Providing more accessible information, communication and promotion of activities and services in appropriate formats.

Dr Ruth Evans, an Associate Professor in Human Geography at the University of Reading said: “This research provided an opportunity for many people in diverse circumstances to give their views and experiences of the important issue of loneliness.

“Service-users and their supporters have told us that cuts to public services mean that specialist support, social and leisure activities that help to reduce isolation and loneliness are under threat and  people may not able to  access crucial help.

“The report is a starting point for addressing the complicated issue of loneliness in our town. We have highlighted best practice from various voluntary and community services and statutory bodies and I am grateful to all those who have supported the research.

“The reality is that tackling loneliness requires everyone working together. The public sector, voluntary and community sector, communities and individuals all have a part to play in looking out and caring for everyone in our community.”

Cllr Graeme Hoskin, Reading’s Lead Member for Health and Wellbeing, said: “Loneliness can affect any of us and the work on this report is a good opportunity to highlight the importance of tackling social isolation. Feeling connected is good for us – for our mental and our physical wellbeing.  By working together I’m sure that we can make Reading a town where people feel connected in our community.”

 

'Perfect storm' for people using learning disability services

Annual State of Care report

15 October 2019

The care given to people with a learning disability or autism is not acceptable.

Too many people with learning disabilities or autism and their families continue to be failed by a lack of local services and poor quality care, according to the Care Quality Commission (CQC).

In its annual State of Care report, the CQC found that quality ratings have been maintained overall – but people’s experience of care is determined by whether they can access good care when they need it.

When people can’t access the services they need, the risk is that they are pushed into inappropriate care settings – ending up in emergency departments because they can’t access the care they need outside hospital, or in crisis because they can’t access community based mental health and learning disability services.

Difficulties in accessing the right care can mean that people with a learning disability or autism end up detained in unsuitable hospitals.

This year’s State of Care considers the pressures faced by health and social care as a whole – but focuses particularly on inpatient mental health and learning disability services, the area where CQC is seeing an impact on quality.

As at 30 September 2019:

  • 10% of inpatient services for people with learning disabilities and/or autism were rated inadequate, as compared to 1% in 2018
  • 7% of child and adolescent mental health inpatient services rated inadequate (2018: 3%)
  • 8% of acute wards for adults of working age and psychiatric intensive care units (2018: 2%)

Since October 2018, 14 independent mental health hospitals that admit people with a learning disability and/or autism have been rated inadequate and put into special measures. Two of these services have since improved, three are now closed and one service is still registered but is closed to new admissions with no people resident.

Although inspectors have seen much good and some outstanding care, they have also seen too many people using mental health and learning disability services being looked after by staff who lack the skills, training, experience or support from clinical staff to care for people with complex needs.

In the majority of mental health inpatient services rated inadequate or requires improvement, a lack of appropriately skilled staff was identified as an issue in the inspection report. This reflects a national shortage of nurses in these areas of practice, with 8% fewer learning disability nurses registered with the Nursing and Midwifery Council in 2019 than 2015.

Ian Trenholm, Chief Executive of the Care Quality Commission (CQC) said:

“In this year’s State of Care, we have highlighted mental health and learning disability inpatient services because that’s where we are starting to see an impact on quality – and on people. There has been a deterioration in ratings in these services – and our inspection reports highlight staff shortages, or care delivered by staff who aren’t trained or supported to look after people with complex needs, as a reason for this.

“Increased demand combined with challenges around workforce and access risk creating a perfect storm – meaning people who need support from mental health, learning disability or autism services may receive poor care, have to wait until they are at crisis point to get the help they need, be detained in unsuitable services far from home, or be unable to access care at all.

“We are strengthening our approach to how we look at these services, and how we use the information that people share with us, so that we can act more quickly to spot and act on poor care. But having the right staff to deliver good care is crucial to turning the tide – as are better integrated community services to prevent people ending up in the wrong place. We’ve seen some excellent care where services collaborate and we want to see more local services working together."

Read the full report

State of Care 2018/19 Easy Read

 

Bereaved families to receive funeral payments quicker

17 July 2019

Families grieving the loss of a loved one will find it easier to get help to meet upfront funeral costs, as a result of a new change to speed up Funeral Expenses Payment claims. 

Previously, a Funeral Expense Payment claim could not be processed without a confirmed date for the funeral to take place, which could lead to longer waiting times for payments to be processed.

But following an important change, families will now be able to make a claim with an estimated funeral date, providing that other key information is supplied. The ability to use an estimated date in a claim is set to significantly speed up the process and payment.  

This new move to speed up the Funeral Expenses Payment process is in addition to a recent change in the evidence required to process a claim.

Recent improvements mean that instead of a final invoice – which is usually received after the funeral – families can instead supply a funeral director contract as an indication of funeral cost. This evidence can be submitted to the Bereavement Support team in advance of a funeral, therefore ensuring earlier access to financial support.

 

Unpaid carers face bleak financial future

9 July 2019

Carers UK has released the findings of its State of Caring survey which show the huge personal and financial cost of caring unpaid for a loved one. Empty purse

On top of providing tens of hours of care every week for family members or friends, more than two thirds (68%) of carers are using their own income or savings to cover the cost of care, equipment or products for the person they care for. As a result, many are struggling financially and are unable to save for their own retirement.

Two in five carers (39%) say they are struggling to make ends meet and more than half (53%) of all carers are unable to save for retirement.

Those struggling to make ends meet are the hardest hit as carers with little money to spare are forking out hundreds of pounds to cover the costs of essentials like nutritional supplements, bed pads and mobility equipment.

The vast majority (78%) of carers who report they struggle financially are paying towards the cost of care services or equipment for the person they support. For those on a low income or receiving Carer’s Allowance – the benefit for people caring for more than 35 hours a week and just £66.15 per week – it is a never ending struggle to make ends meet. Three quarters (73%) of this group are unable to save for retirement.

The report is based on the results of Carers UK 2019 State of Caring Survey of more than 7,500 people currently caring unpaid for family or friends, the majority of whom provide over 50 hours of care every week.

Read more in the full report.

Read the press release.

 

Berkshire March - Forbury Gardens, Reading

Thursday 30 May 2019 1pm - 3pm SEND National Crisis Berkshire

 

 

 

 

 

 

 

 

 

24 May 2019

 

 

The funding crisis in our schools and local authorities is having very profound effects upon our most vulnerable children - those with Special Educational Needs and Disabilities, writes the Berkshire Send Crisis group.

The current SEND Code of Practice (2014) is NOT providing the promised learning experience for our children and young people. This is leaving thousands of individuals emotionally and physically exhausted due to the direct failings of our local authorities, and the discrimination faced when trying to access children’s fundamental right to an education.

There are so many parents and carers struggling and battling an unfair system for their children with barriers thrown up against them. In 2016 only 55.7% of new Education, Health and Care Plans (EHCPs) were issued within the 20 week time limit and there is rarely any action taken to ensure that local authorities are adhering to procedures correctly and on time. Instead we are told that “There is no money” to support our children, and so they continue to struggle unsupported.

In Berkshire, schools are reluctant to take in children with SEND, illegally exclude children with SEND due to having insufficient staff, and our local authorities drag their heels over EHCP applications, frequently forcing parents and carers to go to tribunal just to get any support for their children at all! The funds given to schools to support children with SEND are not ring-fenced, and are frequently used for basics such as staff salaries and supplies, due to the overall lack of funding in schools.

We have now decided to act. Across the country, parents, carers, teachers, organisations, businesses, campaigns, support groups and people from all walks of life will be marching on Thursday 30 May to protest about these failings. The Berkshire SEND National Crisis March will take place in Reading, starting with guest speakers at Forbury Gardens at 1pm, before we march up Broad Street and back to Forbury for more speakers.

Our aim: We want the current SEND and EHCP legislation to be re-evaluated with parent/ carer consultation in line with parent partnership and with continuity amongst regions instead of local policy. We are asking for independent parent governor boards to be implemented with enforcement powers to ensure lawful and ethical practices by local authorities throughout and during the SEND / EHCP process and feel that it is vital that the pathway to diagnoses be increasingly accessible and have a shorter time frame for assessment, to allow optimum efficiency and to enable a more productive outcome for young people and children with disabilities or additional needs.

The law must change to protect our most vulnerable children.

If you would like to be involved in the Berkshire March, please get in touch with the organisers Ruth Rae, Jacqueline Testo, and Annabel Yoxall via email on SENDmarchBerkshire@gmail.com, or find us on Facebook: www.facebook.com/groups/SENDmarchBerkshire/

Our campaign objectives are below:

SEND National Crisis Overriding Objectives

Funding to increase to match needs and ring-fenced for SEND

ALL funding to be increased to meet needs of the child via their EHCP, NOT based on a resource budget.  The child and their needs MUST be at the centre of the EHCP process and ALL Local Authorities to identify ALL needs and specify and quantify provision to be delivered. 

Pathways to assessment and diagnosis MUST have a national maximum 6 week turn around as part of an EHCP assessment as defined in the SEND Code of Practice with schools to be adequately funded to provide early intervention and SEN support. Central Government must fund the EHCPs issued and for SEN support within schools for ALL children to reach their full potential and the funding must be ring-fenced for SEND needs.

Increased funding that MUST be provided independently from the Local Authority to support parents in understanding the SEND process via charities and Parent Partnership Forums in order to make tribunal appeals and Judicial Reviews accessible to ALL parents.

Assessing, monitoring and accountability for improved Educational Outcomes for each child with SEND

Local Authorities must be transparent with their service provision and held accountable by disciplinary action, when evidence that a child’s educational needs have been neglected.

Published data on each Local Authority, in league tables, twice yearly to an independent body such as Ofsted; to summarise their Key Performance Indicators on key areas of the SEND provision process so performance can be measured outside of a formal inspection.  Key indicators could include: number of EHCP requests refused, tribunal outcomes.

ALL costs including private reports via the tribunal process and for Judicial Review to be reimbursed to parents where Local Authority have lost the case or found at fault by the Local Government Ombudsmen. Parents and carers to be provided access to LGA as the current complaints policy hinders the parental right to complain and also delays effective reviewing and implementing of necessary services for each child.

A volunteer Parent and carer boards to be established in each county to work alongside regulatory bodies such as Ofsted, to monitor the delivery of SEND services.

There MUST be tracking of progress of ALL SEND children until the age of 25. 

One consistent SEND process that ALL Local Authorities MUST follow

ALL Local Authorities MUST follow the SEND Code of Practice and the child and their needs must be at the centre of the EHCP; staff MUST have regular, compulsory training. 

ALL local policies based on resources and not need, such as bandings, MUST be ceased, with one consistent SEND policy nationwide; used for all SEND services and enforceable by law. National policy to provide guidelines and conduct rules in terms of parent partnership and SEND service delivery. Co-production between all SEND services so that plans are not weighted to education. Health and social care providers and practitioners to have more involvement in the writing, issuing and deliverance of plans.

 

More than 600 people quit work to look after older and disabled relatives every day

5 February 2019

  • 1 in 7 of the UK workforce caring for a loved one  Leaving work with possessions in a box
  • 6 million have quit their job to care
  • Carers UK calls for better employment rights including five to 10 days paid care leave

New research by Carers UK reveals that 2.6 million have quit their job to care for a loved one who is older, disabled or seriously ill, with nearly half a million (468,000) leaving their job in the last two years alone - more than 600 people a day.

This is a 12 per cent increase since Carers UK and YouGov polled the public in 2013.

The findings also show that more people are caring than previously thought, with almost 5 million workers now juggling their paid job with caring – a dramatic rise compared with Census 2011 figures of 3 million.

The research emphasises the need for UK employers to support the rapidly increasing number of staff with caring responsibilities to stay in the workforce.

Previous research shows those aged 45-64 are most likely to have a caring responsibility, providing a strong driver for employers to support and retain some of their most skilled and experienced employees.

It comes as Employers for Carers, a group of more than 115 employers committed to supporting carers in the workplace and supported by Carers UK, marks its 10th anniversary as a formal forum and launches Carer Confident, the first UK-wide employer benchmarking scheme of its kind.

The pioneering scheme recognises and accredits UK employers who have built carer friendly and inclusive workplaces.

Read the full report here

 

Research: Financial pressure of caring unpaid for a loved one intensifies over time

30 November 2018

  • New research shows that unpaid carers’ finances worsen the longer they’re caring for a loved one
  • Half of people caring for more than 15 years and struggling financially are having to cut back on food or heating
  • UK's leading carers’ charity urges local authorities and employers to provide accessible information on carers’ rights How will I ever get out of this debt?

Caring unpaid for a family member or friend who is older or disabled can have stark financial implications for carers over time, research published by Carers UK, reveals.

The study shows that just two in five (44 per cent) of those caring for more than 15 years could afford their bills without struggling financially, compared with three in five (62 per cent) of carers in their first year.

Double the proportion of people caring for over 15 years have been in debt compared with those in their first year.

The number of carers in debt because of caring increases from 12 per cent of people caring for a year or less to 19 per cent of those caring between five and nine years. The proportion rises steeply to 25 per cent of those who have been caring for over 15 years.

The new research reveals how the financial hardship experienced by many carers is intensified over time with their financial resilience diminishing the longer their caring role continues. Carers looking after someone for more than ten years are having to make tougher financial decisions about cutting back on spending, borrowing money or using savings to manage.

Of carers struggling financially, 42 per cent of people caring for between 1 and 4 years are cutting back on essentials such as food and heating, rising to 50 per cent of those who have been caring for over 15 years.

Emily Holzhausen OBE, Director of Policy and Public Affairs at Carers UK said: “We know that caring unpaid for a loved one has significant financial implications for many people, with two million giving up work to care and Carer’s Allowance the lowest benefit of its kind.

“Our research shows that financial hardship worsens for carers the longer they’re caring and underlines the real need for them to have the right support and information about their rights early on, so they can best support themselves in the long-run. Carers who wish to continue or return to work should have the support to do so.

“It’s easy to miss out on the financial support available and we are urging local health and care authorities and employers to maximise early help for carers by making policies and rights to financial support clear and accessible. Carers can also make the most of our Thinking Ahead tool which helps prepare for the potential costs involved in caring for a loved one to help plan ahead.”

The research comes on Carers Rights Day - 30 November 2018 - an awareness day aimed at ensuring the nation's 6.5 million carers get the crucial information about the rights, financial support, and practical help they are entitled to.

 

Ministers and councils urged to dump ‘disability tax’

Monday 19 November

A survey of more than 600 disabled people revealed that many raided their budgets for food, housing or heating or went into debt to pay for the basic personal support they need for day-to-day survival. Some 40% said charging had increased substantially over the last two years – often by more than half. Piggy Bank

The research, by the Independent Living Strategy Group, uncovered wide variations between local authorities in both the amount they charge for social care support - and who they charge.

The study aimed to establish whether charging is undermining people’s wellbeing and independence – key features of social care services under the Care Act 2014. It concluded that additional stress and the need to cut back on other living essentials show that it is.

The group’s chair, Baroness Jane Campbell, said: “Support provided under the Care Act is meant to improve the wellbeing and independence of disabled people. By charging many for that support, the system is making a mockery of the spirit of the legislation and causing worry, stress and poverty.

“Charging raises a relatively small sum of money which is pushing up costs elsewhere. The financial impact of personal care neglect such as pressure sores, kidney infections or falls, as well as stress related illnesses, means finding extra resources for the NHS.

“That false economy is compounded further by the block that charging poses on integration of health and social care – the holy grail for efficiency in our care services. The money raised through means-tested charges represents only a tiny fraction of the £7 billion removed from social care budgets since 2010.” 

Only 17 of the 152 councils which provide social care know how many people declined or abandoned social care packages they had been assessed as needing once they learnt how much they would have to pay.

The local authority responses to the group’s Freedom of Information request confirm that charging for basic personal support services is inefficient and counter-productive. Around 11% of the funding generated is swallowed by the cost of means-testing and writing off bad debts. The £5 million raised is just 12% of the community services budget yet it has a dramatic impact on those who pay the charges.

Although the report calls for social care charges to be scrapped (as they have been in the London Borough of Hammersmith and Fulham), it proposes other recommendations for the Government and local authorities if that call goes unheeded. These include:

A requirement on councils to provide clear information on how charges are calculated and the right to appeal

Councils should monitor the proportion of people who decline – or give up – care packages following a financial assessment

All councils should undertake an equality impact assessment of their charging policies

Local authorities should work with disabled people’s organisations to agree what costs and income should be included in financial assessments.

Sue Bott from Disability Rights UK said: “If councils are to persist in this iniquitous tax on disability, they must at least reintroduce some consistency and clarity to their approach. The many councils that have failed to conduct an equality impact assessment – and to monitor the numbers of disabled people driven out of the care system by charging – must also get their act together.”

You can read the report in full here.

 

Shocking new report on children with learning disabilities

Half aren't diagnosed in childhood; those who are won't collect their pension.

Monday 5 November

A new report published by the UCL Institute of Health Equity (IHE) shows the Government’s emphasis on ‘fairness’ and fixing a ‘broken society’ has failed, catastrophically, for hundreds of thousands of children with learning disabilities. Sad boy

The IHE report A fair, Supportive Society shows the most vulnerable in society – those with learning disabilities – will die 15-20 years sooner on average than the general population – that’s 1,200 people every year.

More shocking, explains the IHE’s Director, Professor Sir Michael Marmot, is the fact that this difference is not an inevitable consequence of the underlying condition that led to the learning disability.

He said: “This is a direct result of a political choice that destines this vulnerable group to experience some of the worst of what society has to offer: low incomes, no work, poor housing, social isolation and loneliness, bullying and abuse.

“A staggering 40% of people with learning difficulties aren’t even diagnosed in childhood. This is an avoidable sign of a society failing to be fair and supportive to its most vulnerable members. We need to change this. The time to act is now.”

Read more on the Institute of Health Equity website

Easy Read Version 

 

Disabled passengers to keep companion bus passes

Tuesday 30 October 2018

Companion bus passes will continue to be accepted on buses in Reading for disabled passengers who have difficulty travelling alone.  Bus stop bell

The passes – which allow for free bus travel for people accompanying Access Pass holders on journeys – had been put forward as a potential budget saving by Reading Borough Council earlier this year.  More than 1,300 responses were received in response to a public consultation in May when the council wrote to all of its 6,000 Access Pass holders proposing changes to the current Access Pass scheme in Reading, including the removal of companion pass element.

At a meeting of the Council’s Policy Committee on Monday 29 October Councillor Tony Page, Reading’s Lead Member for Strategic Environment, Planning and Transport, confirmed the saving associated with the companion pass element of the Access Pass scheme would no longer be taken forward.

Responding to a question by Councillor Rachel Eden, Chair of Access & Disabilities Working Group, Councillor Page said: “The council has historically provided a more generous scheme with additional discretionary elements for both holders of the older person and disabled (Access) concessionary pass. However, like all local authorities, the council faces significant financial pressures with reduced funding from central Government, and increasing demands on its services.

“The consultation was undertaken between 25 May to 20 July and more than 1,300 responses were received.

“Initial analysis of the responses has demonstrated a clear need for the Companion Pass element of the scheme to remain, as this provides a vital lifeline for disabled residents who are unable to travel alone and rely on carers to help them get out and about. I am pleased, therefore, to announce that the council does not intend to pursue this element of the overall budget saving proposal.”

A full copy of Councillor Page’s response can be found at http://www.reading.gov.uk/article/11451/Policy-Committee-29-OCT-2018 (Item 4 – petitions and questions).

In April 2017, the council removed a number of the discretionary elements of the scheme for Older Person pass holders.   

In February this year the council then agreed to consult with nearly 6,000 Access Pass Holders on a further budget saving proposal which contained three separate elements.  They were to revert to the English National Concessionary Travel Scheme (ENCTS), which only permits free weekday bus travel from 9.30am until 11pm; no longer provide free travel on ReadiBus services for Access Pass holders; and no longer accept companion passes.

The companion pass element will now not be taken forward. Before a final decision is made on the remaining two elements of the proposal, further consultation will take place with holders of the Older Persons Pass who – alongside Access Pass holders – are also eligible to use ReadiBus services for free. Feedback from Older Person’s Pass Holders will then be analysed, alongside the responses already received.

A final decision on any future changes to both the Access Pass and Older Person’s Pass schemes will be taken at a future meeting of the council’s policy committee. All responses will be considered alongside the council’s financial position. Any changes to the scheme that are approved by the committee would then not come into effect until 1 April 2019.