Care Act advocacy referrals ‘way below’ expected level

Advocacy experts fear people are being left without support to challenge council decisions about their care. Too few people are getting independent advocacy they are legally entitled to under the Care Act 2014, experts warn.

Four months after a local authority’s failure to arrange an advocate for a woman led to the first successful legal challenge under the Care Act, council reports reveal a dearth of referrals for independent advocacy. One local authority averaged less than two a month. A second saw just 9% of predicted demand.

Advocacy trainers and providers fear vulnerable adults are being left without support to challenge council decisions about their care.

Councils say they are investigating low referral numbers and working to raise awareness of advocacy support.

The advocacy duty

Under the Care Act, councils are legally required to offer an advocate to anyone who has ‘substantial difficulty’ being involved in assessments, care planning, reviews and safeguarding cases and lacks a suitable friend or relative to represent them.

The advocacy rights came into force in April. The government says more than 32,000 people should benefit this year. But the latest set of Care Act updates filed by councils, and feedback from providers, suggest many are missing out.

Referrals ‘way below’ expectations

A report published this month shows Reading council planned to spend £130,000 for more than 4,000 hours of Care Act advocacy this year. Six months in, just £5,000 has been spent on 170 hours of support. Only 26 people have accessed the service – less than 3% of all assessed for care and support needs.

“Demand is well below what we would expect,” the report says.

The council is running events to raise awareness of the new advocacy entitlement and said “ongoing monitoring” of referral rates was needed.

A report for Nottinghamshire council shows just six people were referred for independent advocacy in the first three months after the act came into force. The council is investigating whether people are being referred appropriately.

One advocate working in the south of England, who asked not to be named, told Community Care his service received fewer than 10 referrals despite expecting hundreds.

Kate Mercer, a leading advocacy trainer, said she knew providers with similarly low referral numbers: “It’s patchy but overall there’s real concern in the sector that councils are either deliberately not promoting advocacy at a time of cutbacks or, a less cynical view, that they simply don’t have the resources to train staff to know when to refer.

The risk is people won’t know what they’re entitled to, councils will do the bare minimum and – with no advocate involved – no-one pushes anything forward.”

Commissioning issues

Advocacy providers warn short-term commissioning is contributing to the problem.

Almost two-thirds (63%) of Care Act advocacy contracts are for less than a year, according to evidence submitted by the Care and Support Alliance to a Public Accounts Committee inquiry last month. One in four deals is a ‘spot purchase’ contract, where councils only pay a fee per referral.

Advocacy is meant to receive £45m funding through the Better Care Fund, a pooled budget between councils and NHS providers. However, a survey of advocacy providers included in the evidence to MPs suggests services expect to receive less than half of the promised funding.

Phillippa Ashcroft, head of policy at VoiceAbility, said the situation made it harder for providers to plan and build awareness of services.

She said: “If you look at the type of commissioning, particularly spot purchasing, it points to more of a gatekeeping mentality. It makes it difficult for providers to train staff and really build momentum locally.

“When Independent Mental Capacity Advocacy was brought in a few years ago, there was significant funding in the start-up phase and there was a network of mental capacity leads championing it. It had a whole raft of support. Care Act advocacy doesn’t have anything like that.”

Ashcroft said some councils had implemented the advocacy duty well, but described the national picture as “poor overall”. Part of the problem is delays in people getting social care assessments, she added.

“This is what we hear from people ringing into our helpline. The advocacy duty actually applies from the point of first contact, request or referral, including self-referral, for an assessment. Advocates support people to prepare for their assessment and without access to advocacy, for both assessments and for information and advice, people have found that they are being sent round the houses instead.”

The Advocacy Action Alliance’s recent monitoring report found: 63% of contracts for independent advocacy were for 12 months or less. Some local authorities that had not commissioned any Care Act advocacy in time for April 2015 required “nudging” by advocacy providers to set up a commissioning process.
In the majority of reported cases (17 local authorities out of 21) the spend on independent advocacy was less than 60% of what the Local Government Association’s Care Act ‘Ready Reckoner’ had indicated it should be for 2015-16, and the average was less than 50%.
15 out of 29 responses reported that their contracts and contracts held by other organisations to provide advocacy had been reduced or ended since April 2015, suggesting a reduction in the provision of advocacy in many local authority areas.

Kath Parson, Chief Executive, OPAAL

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Amplifying older people’s cancer voices into clinical commissioning groups

The final film in the series we have been sharing all this week sets out a rationale for clinical commissioning groups (CCG’s) to engage with local cancer, older people and advocacy projects. The aim of this engagement is two-fold.  Firstly, we are keen to support the voices of older people affected by cancer into local commissioning practice to support service pathway developments.  Supported by OPAAL and the Cancer, Older People and Advocacy programme partner projects older people affected by cancer are actively engaged in starting conversations with commissioners, getting involved in local service design and developing better services for their peers through our local cancer champion boards and our Train the Trainer project.   Secondly we are using this film to help us to make the case for long term commissioning of peer advocacy services for older people affected by cancer by CCGs.

This film features older people affected by cancer talking about the effectiveness of peer advocacy support, alongside health and care professionals and commissioners who are building strong relationships with their local cancer, older people and advocacy projects:

Our Older People’s Cancer Voices project is about taking these messages out into local communities to start, and to support, conversations between older people affected by cancer and local commissioning groups, we look forward to making contact with you soon.

Ang Broadbridge, OPAAL

Helping an older couple live in the same care home

Dora and Simon had been married for 59 years. Dora was blind and had recently developed Alzheimer’s. She and Simon were injured in a fall at home, and Simon was no longer able to care for her while he recovered. During this time, Dora was moved into a local publically funded nursing home.

It became clear that Dora would have to stay in a nursing home, but Simon visited her every day. However, their relationship was threatened when the local authority decided to move Dora into a permanent nursing home that was too far away for Simon and their children to visit.

 

Simon contacted Counsel and Care. They helped Simon to challenge the decision to move Dora on the basis that his and Dora’s right to family life under Article 8 of the Human Rights Act was threatened by the move and the local authority needed to consider this right when making their decision. This helped Simon to persuade social services to allow Dora to remain in the nursing home close to her family and to Simon.

Source: BIHR & EDF ‘Human Rights and Equality in the Voluntary Sector’ (2010)

‘Think carer!’ says Pat Vinycomb

Pat Vinycomb, Local Ambassador for Dorset of Carers UK, spoke at the recent Carers Meeting at Royal Bournemouth Hospital.  The meeting was organised by the Patient Engagement Team and coincided with the launch of pages for carers on the Trust’s website.

Pat’s keynote address ‘Think Carer: Supporting Carers in a hospital environment’ invited the carers present to reflect on when it was that they realised that they had become a carer and the feelings associated with the realisation that life would never be the same again.  In the hospital environment, said Pat, carers should be recognised for their skills and knowledge, feel valued, have the right information and advice and the choice to say no.  She outlined the challenges facing carers who need to understand what has happened and where to go for further help and advice.  She also explained the anxieties that carers may feel: ‘Can I ask staff a question and/ or challenge?’.

It was clear that Pat spoke from her own experience as she described a tendency for carers to feel they must hide their emotions and the inner conflict they can feel.  She emphasised to the nursing staff present that little things really do mean a lot to carers: somewhere to be private, comfortable seating, refreshments, as well as kindness, empathy and hope.  Above all good communication from hospital staff and being kept up to date is important for carers.

L-R Pat Vinycomb, Ambassador – Carers UK and Marion Summers, volunteer advocate – Dorset Macmillan Advocacy

Pat’s presentation finished with a summary of the many types of practical help and support available to carers in Dorset, Bournemouth and Poole and she urged carers to remember that their own health matters. The carers then took part in facilitated discussions to generate feedback for the engagement team.

Later I talked with Pat and with our volunteer advocate Marion Summers (also a carer) about the support that Dorset Macmillan Advocacy can provide to carers.  Carers can be empowered by advocacy support to know their rights and feel more in control.  I was grateful to the Patient Engagement Team to be invited to the meeting and to be able to provide an information stand.  After Pat’s talk I personally had a much better insight into the challenges facing carers when the person they care for is staying in hospital and we hope to involve Pat in our volunteer training in future.

During national Carers Week from 8 June Jo Lee, Senior Macmillan Advocate at Help and Care, and other Dorset Macmillan Advocacy staff attended a number of events to raise awareness of our service among carers.  The Carers Week campaign this year focused on Carer Friendly Communities and produced this useful Checklist tool for carers which includes a section on Health: Carers Week 2015 Checklist.

Kathleen Gillett, Dorset Macmillan Advocacy

 

In conversation with Malcolm

I recently had the privilege of speaking with Malcolm Orgee, a 54 year old in full time employment with a young family. Malcolm is one of the people affected by cancer that our independent advocacy service supports.

After suffering frequent and disabling headaches for six years Malcolm was finally diagnosed with CLL, Chronic Lymphocytic Leukaemia in January 2013. Malcolm remembers the day of his diagnosis vividly, describing to me the weather, cold clear snowy day, the drive to hospital and conversation with his consultant. He was told he had probably had CLL for six years and given a prognosis of a further seven years.

Malcolm described the news as being an ‘absolute bombshell’. His immediate thoughts turned to his family, his partner and two young children. How was he to tell them?

Thankfully they proved to be very supportive, however living with this condition meant he did not want this to dominate family life, he recognised he needed support from outside his family.

Many people are affected in this way, they have a strong urge to protect family members from the worst of their fears and concerns and often need to share these with someone outside the family.

After many tests and visits to Dorset County Hospital he asked his nurse if there was any support available for him. He was told no not really, he didn’t feel the nurse was very effective. Eventually he called Macmillan Cancer Support who gave him the number of the Cancer Older People Advocacy service at Help & Care Bournemouth.

Six months after his diagnosis Malcolm was introduced to Bob Smith. Bob was to become Malcolm’s advocate. The advocacy service go to great pains to match people needing support with Advocates who themselves have had similar cancer experiences. Bob had previously had Mantle Cell Lymphoma and was able to understand Malcolm’s condition from the word go.

Malcolm was struggling with the bewildering array of information relating to his condition and trying to cope with the emotional effects of his diagnosis whilst grappling with the need to inform his employer of his new situation.

Malcolm works as a Head Gardener on a private estate in Dorset, he loves his work and wants to maintain his position. He is thankful he has supportive colleagues and employers. Nonetheless he has concerns as to what the future might bring for himself and his family.

LMalcolm was placed on a ‘watch and wait’ programme, meaning no immediate treatment was offered. This proved difficult for some members of his family to understand, particularly his elderly mother who constantly asks Malcolm when he is going to be offered treatment.
Malcolm finds it difficult to have to repeatedly explain the ‘watch and wait programme’ to his 81 year old Mum.

For two and a half years Malcolm has lived with quarterly hospital visits, monitoring his condition. For two of these years he has been supported by Bob, an Independent Peer Advocate. Bob has been there for Malcolm whenever he has needed him.

Asked to describe his advocacy support to me Malcolm said “I have been massively supported by Bob, he understands my cancer as his own cancer has many parallels. Bob knows what I am going through and has been there for me every step of the way. He understands all the emotional ups and downs, the complexity of my cancer, the day to day practicalities I live with, the whole scenario”.

He also told me he is constantly amazed by Bob’s dedication, always being there for me, particularly as Bob is a volunteer advocate

Malcolm feels this service is absolutely essential and should be available for all those who need it. He wishes he’d met Bob before he was diagnosed for then he would have had all the support he needed from the outset.

Malcolm recommends this highly personal and confidential service to all, he knows he would not have managed so well without Bob’s support.

I am deeply grateful to Bob Smith and all our wonderfully dedicated volunteers. They freely give not only their time, but bring valuable personal experience of their own to share with and inform their relationship with all those they support.

Bob like his many colleagues has spent a lot of time in training, and being supported by professional paid advocates. He has also contributed to the volunteer team’s experience helping to make our Dorset Advocacy Service one in which we can be very proud.

I’d like to offer my personal thanks to Malcolm for sharing his story, he understands our need to capture his and other’s such stories in our attempts to convince others of the value of our work to those who desperately need advocacy support.

Kath Parson, OPAAL Chief Executive

Encouraging news re Dying at Home

New information collated by the National End of Life Care Intelligence Network

Published: 26 June 2015

PHE’s National End of Life Care Intelligence Network (NEoLCIN) works with partner organisations to collect, analyse and present end of life care intelligence from a wide variety of sources. This report summarises the key findings of the network and its partners over the last year. Although much of the research has been published previously, this is the first time it has been brought together in one place.

New findings show there is a growing understanding within the health sector of what is important to people at the end of life.

Key findings from the report include:

The proportion of people dying at home or in care homes continues to increase
Patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference
Two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed.

Factors most importance to people at the end of their life were; having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity. This is entirely consistent with what older people tell our Advocates they want to achieve when describing a ‘good death’.

More GPs are having conversations with people about their end of life care wishes but 25% still say they have never initiated such a conversation.

Download the report, http://www.endoflifecare-intelligence.org.uk/view?rid=872

Government urged to invest £5.2bn in preventative health and social care

OPAAL welcomes this new report commissioned by the LGA calling for an increased investment in preventative health and social care.

The government urgently needs to invest £5.2 billion over the next four years to overhaul the health and social care system, according to a report commissioned by the Local Government Association.
The report by Ernst and Young calls for the government to divert £1.3 billion from the budget each year over the next four year to develop a new health and social care system.

Data shows that around 30% of health and care service users take up over two-thirds of the health and social care budget.
The proceeds from the transformation fund have been recommended to be used on preventative measures, especially for long-term conditions which cost the health system an estimated £88 billion per year.
The LGA report suggests that the extra financing could keep elderly and disabled out of hospital and healthier for longer rather than putting money into the most serious conditions so that the long term state of the health and social care system is improved.
Cllr Izzi Seccombe, Chairman of the LGA’s Community Wellbeing Board, said: “We need an urgent and radical change to the way in which we provide care for the elderly and disabled.
“It is social care services which keep people out of hospital and living in the community for longer. Social care and health are two sides of the same coin – it is quite clear that without adequate funding, social care simply cannot alleviate the pressure on the NHS.
“The Government needs to invest money in a system which will be there to look after people now and in the future, and commit to a long-term strategy to ensure that people get the care they need.”

We believe this includes ensuring that all older people who need independent support to access the care they need and want to maintain wellbeing deserve to access this support, and if necessary independent advocacy to ensure their voice does not get lost in the system.

Access the full report here. http://www.local.gov.uk/documents/10180/6869714/Creating+a+better+care+system+June+2015/0692d75a-5c26-4b85-a2b5-9e7dd59b455e

Ageing without children – who will speak up for those without family?

I recently had the pleasure of meeting with Kirsty Woodard Founder of Ageing Without Children, AWOC. Kirsty really opened my eyes to the very great need for Independent Advocacy for this group of older people. We are now exploring how we can work together to provide independent advocacy support to this largely unseen group of people. Below is a blog written by Kirsty to help raise awareness of AWOC’s work. If you are interested in finding out more about AWOC or supporting work in this area please do contact Kirsty directly, her contact details are below.

“Not so much hands-on care as Independent Advocacy, championing me, and being sure to have my best interests at heart”

Earlier this year, AWOC carried out a survey of 400 people ageing without children. Their biggest fear? Having no one to speak up for them or act in their best interests when the time came that they could no longer do it for themselves. These comments were typical

“I will have no one to look out for me and my interests as I am currently doing for my father with dementia. The system is not geared to doing this and assumes there are family members”

“nobody to speak up for me when I cannot speak up for myself especially where health care is concerned”

“you hear terrible stories about abuse in care homes – often it is only exposed because the children or grandchildren become concerned and can prove what is happening”

At least 1 in 5 people over 50 currently have no children (we only have the statistics for women as none are kept on men) and by 2030, 2 million people will be over 65 without adult children.

Why does this matter? It matters for two main reasons. Firstly, the state assumes older people have family and there is an expectation that they will be involved with offering care and support. Indeed, the current government have suggested that families should take more responsibility for older people as the state is rolled back.

“In those countries, when living alone is no longer possible, residential care is a last rather than a first option…..If we are to tackle the challenge of an ageing society, we must learn from this – and restore and reinvigorate the social contract between generations.
And uncomfortable though it is to say it, it will only start with changes in the way we personally treat our own parents and grandparents.” Jeremy Hunt,
Health Secretary in Speech to National Children and Adults Services Conference.

To be fair, the evidence shows that most of the time families especially adult children do intercede though whether of course they should have to plug the gaps in a failing social care and health system is another matter. However, the social care and health system is not geared up to deal with those who do not.

Secondly, society as a whole in the UK remains resolutely ageist; while sexism, racism and homophobia are deemed unacceptable, derogatory comments and assumptions about older people pass by without remark. Older people as a whole are seen as a burden on society, lacking value or importance. Abuse and poor treatment of older people has also been much in the news; from 15 minute home care visits, the scandal at Mid Staffordshire hospital to Panorama to ‘protecting our parents’, there has been a stream of reports highlighting appalling treatment of particularly frail and vulnerable older people. In the light of this, it’s no real surprise that people fear ageing without children and worry about being ignored and badly treated.

For those people ageing without children, Independent Advocacy will be absolutely crucial. However most local authorities are struggling to fund advocacy with money often only available for statutory provision, IMHA, IMCA, Complaints Advocacy and since April 1st 2015 Advocacy under the Care Act 2015. Broader based or long term independent advocacy is under more and more threat. This is a real worry when it’s clear that the need for it is going to grow considerably. This will need to be addressed so that people can age without children without fearing that they will be ignored and overlooked.

“I wonder, who will be shouting for me? Or will I be the old lady dying alone in a hospital bed because no one cares”

Kirsty Woodard
Founder AWOC
http://www.awoc.org
ageingwithoutchildren@gmail.com
@awocuk

New Guide to help personalise care services through Individual Service Funds

I welcome this new guide which has been published to help councils and providers meet the Care Act 2014 guidance on Individual Service Funds (ISFs).
The Guide http://bit.ly/1N1NQxV Individual Service Funds (ISFs) and Contracting for Flexible Support – is aimed at council commissioners and providers, and sets out how councils can contract flexibly with a service provider to meet a person’s needs, and contract in a way that gives the person more control over their own support.
ISFs help people with care needs to have flexible, personalised support, tailored to individual preferences without having to manage the responsibility of cash direct payments. Advocates working on the COPA project will now be able to access this guide to help them support those most in need. I am often told stories of some of the people we support who desperately want to remain living in their own homes, with the support of Peer Advocates armed with this new type of resource it should give power to their elbow to ensure people are able to plan and receive the care they want and need to help maintain wellbeing.
It means people and families can choose to live in their own homes, with their own support and using their own budgets, while the councils that commission those services work differently with community organisations and providers of services to improve outcomes for people they serve and reduce costs.
United Kingdom Home Care Association Chief Executive and TLAP Board lead for Self-directed Support Bridget Warr says: “Individual Service Funds are a valuable and currently underused alternative where people don’t want to take a Direct Payment.
“This helpful guide encourages commissioners and providers to ensure they are available and effective in helping people obtain the support they need to live at home.”
Uptake of ISFs are fairly limited to date, but the guide recommends they should be the default option when a person does not want or is not able to manage a cash direct payment. The Guide also recommends that councils contract with providers of services in a way that enables them to be more accountable to people who use services and more responsive to their needs.