Archive: 2022

  1. T’is the Season to be…?

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    I’m no stranger to the whole grief thing.  Losing my Mum earlier this year wasn’t my first rodeo.  I lost my son, Joshua, when I was eight months pregnant.  Delivering a baby that I’d lost in the room of a maternity unit filled with happy, healthy babies.  Surrounded by delighted mums and dads and balloons announcing the joyful arrivals.  So I have shared a bed with grief before and never really left its sheets.  When my Mum became unwell and received a diagnosis of dementia in about 2008, I knew – or so I thought – how it would play out, as my Grandma had succumbed to dementia and I’d witnessed her significant and speedy decline through a teenage lens. So I figured I was equipped to deal with my Mum travelling a similar path. I wasn’t.

    After a couple of years of being cared for at home and reaching the point where hers and my younger brother’s dignity, as he cared for her, were at risk of being compromised, we moved her into a care home.  Within a month she was non-verbal.  The only sounds she made for several years were counting, mumbling and the odd chuckle.  Followed by years and years of nothing.  Just silence. Mum’s day reduced to eat, sleep, silence, repeat,  which went on for over a decade. 

    And so the grief begins.  A living grief.  A decade in which Mother’s Days, birthdays and Christmas’ come and go and you supress your feelings of loss as you watch other people out and about with their fully capacitous Mum, living life together and sharing important moments.  Whilst you’re in a period of mourning for the person, who is alive, but not living. Disappearing in front of your very eyes, piece by piece.  The person you love reduced to a mere shadow of their former self.  A body ravaged by the cruellest of conditions.

    Whilst life is going on all around you, you begin to prepare yourself for her demise.  Planning a ‘good send-off’, thinking about who will still remember her after being out of circulation for so long. What to put in her eulogy as your last act of love.  And practical things like what type of coffin you will buy (Banana leaf by the way, understated, beautiful, natural.  Just like her.) You convince yourself that her death is just a formality, an end point.  That the day will come, she will die and you will be silently relieved that she is no longer trapped inside a body that doesn’t work anymore without daily support and nursing intervention.  That her suffering has ended. Because for years and years and years, you have wondered if she is calm and at peace inside her own silent world, or whether she is confused, scared and silently screaming for it all to end.

    Then the day dawns.  The phone rings in the early hours one Sunday morning and you hear the words ‘I’m sorry Justine, your Mum has died.’  Seven every day words ending 14 years of limbo. Relief would surely follow wouldn’t it?  Our family had closure now, did it not? We could finally get round to the send off we had all thought about, but never talked about, over the years. Then suddenly it hits you.  The Real Grief.  Pain that has been bottled up tightly inside you for so long.  The last 14 years were, you discover, merely a dress rehearsal. This was the final act.

    So this year Christmas is less ho, ho, ho and more no, no, no.  There’s no tree up, my halls aren’t decked with holly and it’s a Christmas song-free zone. Christmas cheer is in short supply, because I’m grieving and I miss my Mum to my very core.  So I’m going to ride the grief wave and brace myself for the unpredictability of the sucker punch it delivers when you least expect it.  When you hear a certain song, or a memory is triggered, or you remember that she is no longer there. Because as the saying goes ‘grief is the price we pay for love’, and boy did I love her.

    But dementia, dementia can do one.

    For Mum.

    If you are struggling with feelings of grief or loss, Christmas can be a really difficult time.  If you need some help or support to process your feelings, we have a free download that may help you make sense of things, which you can find here https://advocacyfocus.org.uk/becoming-your-healthy-self/

    If your grief or loss is making you very unwell or you are struggling to cope over the holiday period, then you can contact the Samaritans on 116 123.  If you need someone to talk to, they will listen and not judge.  Or go to A&E and seek the help you need.  Grief and loss are unpredictable and it is different for everyone.  Speak to someone who can help you through it.  

  2. The importance of advocacy

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    The importance of advocacy

    In this blog post we will explore why advocacy is so important, but first, we need to explore what advocacy actually is…

    Every person will describe advocacy in their own way, some might have a technical definition based on legislation and codes of practice, self-advocates would describe it as the thing that got their voices heard. At Advocacy Focus, we like to describe advocacy as supporting somebody to speak up and be listened to, ensuring their views, wishes, and feelings are heard and taken seriously. Advocacy helps people become more involved in important decisions about their life and it can be a lifeline for many.

    Advocates help people understand their rights, their options and support individuals to make an informed decision. We help people live the lives they want to live!

    So why is this important, we hear you asking!

    The recent exposure of the abuse occurring at the Edenfield Centre, a mental health hospital, hit the news in September 2022 after a Panorama show aired. This documentary saw patients being subjected to long seclusions, being victims of physical and emotional abuse amongst other abhorrent behaviour by the hospital staff. Advocacy exists to protect the rights of people and acts as an additional safeguard to patients. Advocates are by the persons side, on their side, we support people to understand their rights under their sections and helping amplify their voices and involvement in decisions made about their care and treatment.

    Today marks the start of Advocacy Awareness Week, a campaign that this year is focusing on promoting Human Rights. Each day this week will promote a different Human Right, and today’s is the Right to Life. The Human Right that safeguards us from neglect or abuse in care settings, like those at Edenfield were subjected to.

    Advocacy is of utmost importance to protect the rights of people who may otherwise be dismissed or ignored. Advocates are often the only independent support that people receive in some of the most challenging moments in their life – so we must continue to promote advocacy services all over the country. We often find that people in hospital are completely unaware of their rights and often feel lost, confused, and scared. Information and self-help tools can be a lifeline for people feeling out of control when it comes to their care and treatment. Today we want to promote our free toolkits so that people know they’re not alone and there is help available.

    Mental Health Self Help Toolkits – Advocacy Focus

    Sometimes tools are not enough, and that’s okay, Advocacy is here for you, by your side and on your side. If you need help finding your local advocacy service we can help, you are not alone.

    Together, we can prevent more people from enduring the abuse and neglect.  Together, we can help people live the lives they want to live.

  3. Do you want to become a Trustee?

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    Are you interested in becoming a Trustee of a leading advocacy charity and Top Employer in Mind’s Workplace Wellbeing Index, 2022? We are especially keen to hear from people within underrepresented groups.

    Over 12 months we supported 6381 people with complex advocacy issues.

    What skills could you help us with?

    • Lived experience of advocacy or health and social care issues
    • Equity, Diversity and Inclusion
    • Fundraising and business development
    • Local government policy and procurement

    Who we are:

    • We have provided person-led advocacy across the North of England since 1998
    • Our advocates support people to understand their rights, options and enable people to make informed decisions about their health and social care.
    • Simply put: we help people live the lives they want to live.

    If you are interested in becoming a Trustee or would like more information, please email admin@advocacyfocus.org.uk

  4. Menopause Focus

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    We are incredibly excited to be releasing the first Volume of our Menopause Focus series, on World Menopause Day!

    Volume 1: What is Menopause? – covers a range of topics from an introduction to what menopause is, symptoms, support groups and more!


    Download the booklet by clicking here!

  5. Liberty Protection Safeguards

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    In March, the government launched a consultation on various documents that will support the implementation of the Liberty Protection Safeguards. This included a new draft Mental Capacity Act Code of Practice and new draft Regulations. These documents have been long-awaited since the Mental Capacity (Amendment) Act (which introduced the Liberty Protection Safeguards) was passed in 2018. It was hoped that these documents would put ‘flesh on the bones’ of the legislation and give more detail about how the Liberty Protection Safeguards (LPS) will work in practice. 

    What are the Liberty Protection Safeguards (LPS)? 

    If someone is deprived of their liberty through their care or treatment arrangements, and they lack capacity to consent to the arrangements, this must be authorised by a legal framework to ensure the person’s human rights are protected. Currently, this is authorised via the Deprivation of Liberty Safeguards (DoLS) if the person lives in a care home or is in hospital, or by the Court of Protection if the person lives in the community. LPS will replace the DoLS and will apply to all settings, so there will be no need to apply to the Court of Protection for an authorisation. LPS will also apply to people aged 16+.  

    What have we been doing during the consultation? 

    As well as preparing and submitting our consultation response, Advocacy Focus have been busy engaging with our stakeholders and colleagues from other advocacy providers. We have chaired a nationwide LPS subgroup of advocacy providers, facilitating discussion of the main talking points arising from the consultation documents. We have also signed up to a joint advocacy sector response with around 30 other advocacy providers. 

    We co-hosted a webinar with Kate Mercer Training and NDTI to engage the wider advocacy community with the consultation. This involved looking at some of the key provisions of the draft Code of Practice and Regulations relating to advocacy and the IMCA role (and the consultation questions relating to these) and thinking about some of the key points advocacy providers may wish to make when responding to the consultation. Neil Allen from 39 Essex Chambers also kindly attended and spoke about the good points and concerns about advocacy provision as set out in the draft Code of Practice.  

    We have attended meetings held by the Department of Health and Social Care to discuss our feedback on the role of the Independent Mental Capacity Advocate (IMCA) and the Appropriate Person.  

    We have also been discussing our thoughts and main feedback points from the consultation with our commissioners, making them aware of the changes and the level of funding that is likely to be required in order to facilitate the increased number of advocates that will be needed to implement the LPS as envisaged by the draft Code of Practice. 

    What points did we make in our consultation response? 

    In our own consultation response, we made several points relating to the provision of advocacy and how the Code and Regulations address this. We raised concerns around how neither the Regulations nor the Code set a minimum required frequency for Independent Mental Capacity Advocates (IMCAs) to visit the person deprived of their liberty (which could lead to the quality of the IMCA service becoming a ‘postcode lottery’). Further, the regulations do not give an IMCA the right to meet with the person deprived of their liberty when the IMCA is supporting their Appropriate Person – we feel that this reduces the current 39D IMCA role where the IMCA provides an additional safeguard to the person when being supported by an unpaid representative (generally family or friends). We referenced several parts of the draft Code of Practice where the role of an IMCA is incorrectly stated – e.g. IMCAs are not mediators, nor do they express a view about what is best for the person or what the person should do. 

    We looked at the figures estimated by the impact assessment and compared those to the current trends we see in our referral rates under DoLS. We also considered the increase in the level of responsibility in the role of the Appropriate Person (that will be taken on by a family or friend) compared to the current unpaid Relevant Person’s Representative role (RPR) and questioned whether as many people would be prepared to take on this role as the impact assessment states. We therefore made the point that the actual demand for advocacy would likely be higher than estimated by the impact assessment. We have made the point that if LPS is to be as person-centred as the draft Code of Practice envisages, it is vitally important that sufficient funding is provided to advocacy providers to train their existing advocates in LPS but also to recruit and train new advocates. 

    We also share the concerns raised by many others throughout the consultation period regarding the definition of deprivation of liberty as set out in the draft Code of Practice. We raised concerns that if the definition is applied as set out in the draft Code and example scenarios, lots of people who currently have a DoLS authorisation would not be eligible for an LPS authorisation, leaving lots of people heavily restricted but without any safeguards or support in place to challenge this. 

    What happens next? 

    The government will publish their response to the consultation – they have said that they will do this in Winter, so this could be late this year or early next year. There is not yet a date set for the implementation of LPS. We will continue to monitor for updates and continue to hold meetings of the advocacy LPS sub-group. 

  6. “Undercover Hospital: Patients at Risk” blog post

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    The BBC Panorama documentary “Undercover Hospital: Patients at Risk” which aired this week, clearly showed how some mental health services are still systemically failing people who need their help and support at a time of crisis. The mental health unit highlighted in the documentary is now the subject of a criminal investigation, after an undercover reporter exposed the unit’s degrading treatment and abuse towards the patients. There is still a misconception that abuse does not occur within professional services, especially since the Winterbourne View hospital abuse scandal in 2011. However, Panorama exposed a toxic culture and abusive environment within the secure Edenfield Unit in Prestwich, where detained patients were being treated in an inhumane and degrading way. Patients were being subjected to physical, emotional, and psychological abuse, instead of receiving the necessary therapeutic care and treatment to aid their recovery and subsequent discharge from the hospital.

    Whilst we have no knowledge of what services or organisations may have been available to the patients within Edenfield, as an independent advocacy provider, Advocacy Focus trains our team to adopt a degree of professional curiosity. To be tuned into their gut feelings, to question, challenge and to think that if something doesn’t feel right, it usually isn’t. Any advocacy provider working within health and social care must have a presence within mental health hospitals as a priority, to help safeguard, listen to and inform people of their rights. People’s voices should never be silenced just because they are experiencing a mental health crisis. Any concerns raised should be investigated to the full extent, and the abuse stopped and prevented from ever occurring again. If patients on the wards and their families know what their rights are and who they can turn to if things go wrong, then they are bound to have better outcomes, feel safe and move towards recovery and their return home.

    If you have a friend or loved one receiving treatment currently from a mental health facility, or something like this has happened to you, you can find out more about Independent Advocacy and how we can help. Advocacy Focus is independent of the local authority, health and social care services and is on your side. You are not alone and there is help available. If you need more information about the services our charity provides, you can find it here. Independent Mental Health Advocacy (IMHA) – Advocacy Focus

    If you have been affected by the programme and are struggling to understand and process the events you have witnessed, then please reach out to Advocacy Focus for advocacy support or for help accessing further support from other local organisations. You can call us on 0300 323 0965, or reach out via our live chat facility at www.advocacyfocus.org.uk

  7. Positive Voices Conference

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    Last week some of our Advocates travelled down to Birmingham for the Positive Voices conference! This post is a collection of images from their Twitter takeover! If you want to read through the Twitter thread – just click here!

  8. Advocacy Focus awarded ‘Top Employer’ in Mind’s Workplace Wellbeing Index 2021/22

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    We are proud to announce that Advocacy Focus has been awarded Top Employer, out of the 119 organisations that took part in Mind’s Workplace Wellbeing Index.

    We have also been awarded Gold in Mind’s Workplace Wellbeing Awards for the third year running! The Index is a benchmark of best policy and practice in workplace wellbeing and celebrates the good work employers are doing to promote positive mental health.

    A Gold award means we have successfully embedded mental health into policies and practices, utilising a variety of best practice approaches and have demonstrated a long-term, in-depth commitment to our team’s mental health. Some examples of the things we have done are; created a wellbeing room for people to relax and take time out in a safe space, offered a wellbeing hour where staff are encouraged to take some paid time away from work to focus on self-care, and organised activities such as wellbeing walks and online catch-ups that everyone at Advocacy Focus is welcome to attend – along with their much loved canine friends.

    With governments across the UK making changes to the rules and the levels of financial support available related to Covid-19, research shows that more than half of the 41,927 employees across 119 employers who participated in this year’s Index staff survey, are more anxious than ever as they return to the workplace. So, regardless of the size of an organisation, mental health and a strong cultural response to workplace wellness should be high on the agenda. That’s why Advocacy Focus has joined other forward-thinking employers and taken steps to create mentally healthy workplaces by participating in Mind’s Workplace Wellbeing Index 2021/22.

    Justine Hodgkinson, CEO at Advocacy Focus said; “Our team do a really difficult job. They are out in communities working with people at their most challenging times, so the least we can do as an organisation is help our people to turn up as the best version of themselves. We do this by normalising the conversation around mental health and wellbeing and by providing safe, non-judgmental work spaces, where they can bring their whole self to work.

    “The world we live in is ever-changing and the people that turn up at the door to do the job are experiencing challenges they’ve never faced before. So, we don’t tick boxes, workplace wellbeing is not tokenistic at Advocacy Focus, it is an integral part of what we do, and what we will continue to do.”

  9. World Refugee Day 2022

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    Today is #WorldRefugeeDay and it’s hard to think of a period when the international refugee regime has felt more under threat.

    It isn’t just the government which is directly attacking the legal principles which were set out to protect them, across the world refugees are demonised and discriminated against.

    Countries like Greece continue to operate illegal pushback operations which have already cost thousands of lives. The UK continues to enact inhumane policies, such as tagging and forced deportation. Denmark is attempting to follow suit and build on existing policies of confiscating asylum seekers’ valuables.

    In France both asylum seekers and those seeking to help them routinely face attacks from the authorities. Italy has seen a concerted attempt to criminalise humanitarian assistance for those crossing the Mediterranean.

    There are countless more examples, and it’s easy to feel bleak and helpless in the face of it all. We have however seen that hope shines eternal. The proposed deportation flight to Rwanda on Tuesday was stopped thanks to the efforts of diligent lawyers and campaigners. Communities have stood up, as in Peckham, to prevent immigration enforcement removing people.

    #WorldRefugeeDay is all about 

    • Protecting those who so desperately need it. 
    • Amplify their voices and 
    • Continuing to campaign for their rights. 

    Show we stand #TogetherWithRefugees, because together we can turn the tide and create a more welcoming world.

    Here are some useful links if you, or someone you know, needs support:

  10. Masterclass on Conditional and Absolute discharge

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    On Tuesday 24th of May we were joined by a host of speakers from across the country to discuss conditional discharges and how Independent Mental Health Advocates and practitioners can support individuals who are subject to this section.

    Perspectives were shared by legal experts, approved clinicians, the Ministry of Justice, Independent Mental Health Advocates (IMHA), family, friends, and most importantly, those with lived experience. We also launched new resources including information for conditionally discharged patients in plain English, guidance for family members and guidance for IMHA’s to support conditionally discharged patients. There is also a patient’s rights easy read in development.

    Speakers included 39 Essex Chambers Barrister Neil Allen, Associate Director of Nursing Christine Hutchinson, Mike Nolan the Head of Team 2 in the Mental Health Casework Section of the Ministry of Justice, and Roger Banks who is the National Clinical Director of Learning Disability and Autism at NHS England.

    You can find below the resources mentioned during the event, and we welcome you to share these widely through your networks to ensure all who need this information have access to it:

    Brand new IMHA resources

    Advocacy Focus – Conditionally Discharged Presentation Workshops slides

    Conditional Discharge Rights Launch

    Submit a discharge request for restricted patients 

    Unlock – Advocacy service for people with criminal records

    Deprivation of Liberty Safeguards Practical Guide

    Working with restricted patients GOV.UK

    If you attended our event and haven’t completed the evaluation form, you can find it here

    If you are a professional working with people who are conditionally discharged, the updated practice guidance can be found here

    To stay up to date with future events and resources, please sign up to our newsletter here.

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