Comments Off on SETTING THE STANDARD FOR HEALTHCARE EXCELLENCE & DRIVING IMPROVEMENT
Advocacy Focus SHORTLISTED FOR THE 2023 HSJ PATIENT SAFETY AWARDS
Advocacy Focus is thrilled to share the news that our Advocacy for Autistic People in Mental Health Inpatient Settings pilot has been shortlisted for Mental Health Safety Improvement Award and Patient Safety Pilot Project of the Year at this year’s HSJ Patient Safety Awards which recognises safety, culture and positive experience in patient care, celebrating its worthy finalists on a national scale.
The HSJ Patient Safety Awards acknowledges the hard-working teams and individuals across the UK who are continually striving to deliver improved patient care.
A record-breaking 515 entries were received for the HSJ Patient Safety Awards 2023, with 209 organisations, projects and individuals making it to the final shortlist. The high volume – and exceptional quality – of applications is once again reflecting the dedication and commitment to patient care within the UK’s healthcare networks.
Of the 24 categories, three are new for 2023, representing some of the recent initiatives and current focus areas within the NHS. These comprise the award for staff wellbeing initiative of the year; safety improvement through technology award; and urgent and emergency care safety initiative of the year
The judging panel was made up of a diverse range of highly influential and respected figures within the healthcare community.
Following the thorough judging process to date, Advocacy Focus was shortlisted, ahead of the official awards ceremony to be held later this year in Manchester (September 18th). The Awards are a highlight of the HSJ’s annual 2-day Patient Safety Congress (taking place on 18 & 19 September), where delegates working at the forefront of safety, quality and clinical excellence will come together to join in with open and honest discussions about the current reality of safety.
At this first stage of judging, the shortlist was set against three clear criteria; clinical and specialist excellence; enacting organisation-wide change and service/system innovation.
Our pilot aimed to bridge the gap in the Mental Health Act and provide advocacy support to autistic informal patients ensuring their wishes and views were heard and respected. Supporting a potentially more vulnerable group of people to be aware of their rights and support them to be heard. Additionally, we have been engaging with autistic inpatients across Lancashire and South Cumbria NHS Foundation Trust (LSCFT) hospitals. The aim of this engagement has been to gather the views, wishes and experiences of people across the trust surrounding their care and treatment and their experience of advocacy. These views have been collected with the vision of this shaping how inpatient services meet the needs of autistic people using their services and how effective advocacy services are.
It is incredibly exciting to have the pilot work we have done be shortlisted for two HSJ Patient Safety Awards. We have been privileged enough to amplify the voices of people in inpatient services and promote change to better meet their needs based on their own unique experiences. Providing advocacy to autistic informal people who would ordinarily not have independent support and have that work recognised is an incredible achievement for all our team who were involved.
Ellie Bradley
SJ editor Alastair McLellan, adds; “As always, it’s a pleasure at this stage of our lengthy judging process, to be able to offer my congratulations to Advocacy Focus, as the shortlisted finalists are revealed for this years’ HSJ Patient Safety Awards.
“Every one of the projects, Trusts, teams and individuals who entered this year have truly demonstrated their skills in setting – and delivering – the highest of standards in healthcare excellence, presenting our venerable panel of judges with some difficult decisions.
“I’m looking forward to welcoming our finalists to the awards ceremony in September, where we’ll have a fantastic opportunity to come together and celebrate some really impressive achievements, whilst sharing experiences, best practice and learning from our colleagues working in a diverse range of roles across the healthcare sector.”
Our charity’s core focus is to support people going through health and social care processes. We don’t deal with widgets or products. Our business is people. People that are going through some difficult and upsetting things. That’s why wellbeing and a safe workplace environment is a key focus of ours. Our team can’t help and support others if they are not well themselves. Or are struggling at different times in their lives. So wellbeing starts with our people.
We began our wellbeing journey in 2014. We looked at ‘normalising the conversation.’ Letting our team turn up as their whole selves, however they were feeling, without fear of being judged. After all we are an advocacy charity, so being non-judgmental is central to all we do. But change, even of the good kind, is still change and things didn’t happen overnight. However, it worked, because we were fully committed to putting wellbeing at the heart of our people offer. It was too important not to, failure was not an option. We started with little things at first, bitesize sessions on topics such as stress, ‘time to talk’ days and random acts of kindness, like an early finish workday.
We set up a Wellbeing Team who were there to support their colleagues when needed, but also planned activities for our team meetings. Origami one time, a pop quiz the next. Little steps towards a culture that cared about its people. The Wellbeing Team then developed and rolled out ‘healthy self’ toolkits for both our team and the wider community. Because wellbeing isn’t something that should be contained or kept secret. It should ripple beyond the walls of any organisation and benefit family, friends, communities. So that is what we did. We went into colleges, walked around Accrington town centre with signs around our necks asking people to talk to us about how they were feeling. And they did that in their droves. Because people want to feel something, anything. They want to feel connected and be a part of something. They want to be seen, heard and listened to.
Today we have a safe and positive workplace. We have people that can turn up with anxiety, depression or struggling with their menopause symptoms and know someone will listen to them. We have birthday days off, one wellbeing hour every week, fully flexible working and extra ‘life leave’ for special occasions such as weddings or moving house. We have a wellbeing room in our head office in Accrington that the team took ownership of. Our people can go in there to read, rest, relax and even have a power nap if they are feeling tired. A workfree zone just for them. We go on regular wellbeing walks – dogs included – and we celebrate success together at team meetings or work parties. Because we are successful. Our charity has grown beyond its Lancashire borders into Salford, St Helens, Trafford and the wider North West. Because wellbeing is not just the right thing to do, it reaps huge rewards when it comes to a productive, happy workforce that get their difficult job done and deliver best practice advocacy.
Wellbeing isn’t complex. It isn’t something to overthink. It is simply being human and allowing your people to be human too. It helped us weather the pandemic and the ongoing cost of living crisis. Our team, although they have their own personal challenges, are looked after and valued. That cannot be understated. Here’s to wellbeing and to being human first, employer second.
It’s Mental Capacity Act Week of Action, and we want to shine the light on one of our vital advocacy services, that is often a lifeline to family and friends of a loved one who is Deprived of their Liberty in a hospital or care home. I want to talk about a specific advocacy role known as a 39d IMCA (Independent Mental Capacity Advocate). A 39d IMCA is available when a standard authorisation (a formal document setting out a person’s care arrangements) is in place to deprive them of their liberty. This means they are subject to a DoLS (the Deprivation of Liberty Safeguards). The person will also have an unpaid relevant person’s representative (RPR). This is normally a family member or a friend, and both the family member or friend and the person being deprived of their liberty are entitled to the support of a 39d IMCA.
A key function of a 39d IMCA is to support the person being deprived of their liberty and the RPR to understand their RPR role and the person’s rights. The RPR must be confident in exercising their rights. A 39d IMCA is expected to take reasonable steps to help the relevant person and the relevant person’s representative. This can include helping them to: understand the legal terms of the deprivation of liberty, the assessments which are required, and how to exercise the person’s rights if they object to the deprivation of liberty, or elements of it (these are referred to as restrictions).
Family and friends undertaking the role of RPR can often become confused, overwhelmed, and unsure if they are doing the “right thing”, as an RPR you need to be confident to address issues affecting the person who is deprived of their liberty. That’s often where we come in. A 39D IMCA can support the RPR and help them build the confidence to advocate for their loved one. It can be challenging for an RPR if a loved one is unhappy or unsettled in a care home that they themselves may have picked and agreed to them moving there.
As an RPR it’s important that you can exercise the loved ones Article 5 (4) right to challenge their detention. This can often conflict with the RPR’s personal values and opinions. A 39D IMCA can support the RPR to overcome their personal obstacles and help with starting the challenge process.
As a service we regularly collect feedback and I wanted to share with you some recent experiences of people we have supported in their role as RPR as a 39D IMCA.
“I had a long, detailed, and informative chat with Advocacy Focus with regard to my role as a Relevant Persons Representative (RPR) for a person who is subject to a DOLS (Deprivation of Liberty Safeguards). Whilst it was decided that at present, I do not require support from the Advocacy service, it was good to know that support in the future would be available if required. From this conversation, I gained some useful knowledge about my rights as an RPR that I was previously unaware of. Thank you.”
“I recently had contact with Advocacy Focus in regards to the RPR position for a relative who is subject to Dols. This person was appointed to my relative’s case and contacted me to discuss. I found this lady to be such a wonderful person to speak to, very attentive, and made me feel so much more at ease about the whole situation. I can’t thank her enough. The whole experience was great from start to finish.Nothing was too much trouble, any questions I had were answered in depth and helped me and my family a great deal. Highly recommended!”
“They have ‘gone beyond’ in supporting us through an extremely difficult time in our lives. Whilst the decision we now face is extremely difficult, at the very least our mum will have her wish and have the chance to come home.”
If you need any help and support with a family or friend who is Deprived of their Liberty, contact us on 0300 323 0965 and our team will do their upmost to provide the assistance you need.
Comments Off on A day in the life of a Children’s Advocate.
9am – Check & respond to any emails/texts and voicemails. Look at “To do list” for today (I love a “To do list” and couldn’t survive without one!)
10am – I support a young person at an Initial Child Protection Conference. I meet up with the young person 15 mins before the meeting starts. I speak to the young person about where they want to sit and who they would like to sit next to and talk through their wishes and feelings that we prepared during a previous visit and decide if the young person wants to read them out. The young person tells me that they would prefer that I read them out in the meeting to start with. I also support the young person with talking to the Chair of the conference before it starts. The young person is made subject to a child protection plan. After the conference, I speak to the young person about what happens next and arrange to visit them again before their first core group.
11.30 – Preparation for visit this afternoon. The Social Worker has said that the young person can find talking to new professionals daunting and nerve racking. The young person loves dinosaurs though. I brush up on knowledge of dinosaurs so that I can start a conversation about them. I also take a call from a young person who wants me to visit them this week. Book time in for tomorrow to see them.
12pm Some lunch
12.30 – Check emails/voicemails/texts. Email from Complaints Team with a Stage One response. I try to contact the young person to discuss this with them and leave a message. I will try and call them back after 5pm.
I also make some follow up calls with social workers, an Independent Reviewing Officer and school pastoral staff.
1pm Travel to next visit.
1.30pm Initial visit to a new young person. I begin by chatting about their day, school and dinosaurs. This seems to help the young person open up about some issues that they are experiencing at the moment. I discuss options with the young person and agree actions. I have learnt a lot about dinosaurs today
3pm Residential drop-in session. I speak to the young people who live there. One young person raises with me that they would like an increase in pocket money. I support the young person to discuss together with staff team. Staff team agree to speak to the residential manager to discuss further.
4.30 Back home, I follow up on actions agreed with the young people I have seen today. I take a call from the residential manager who agrees to increase the young person’s pocket money. I speak to the young person to let them know and they say that they are happy that they will be getting a rise in their pocket money.
5pm – Calls to young people and update case notes from today’s visits. I have a visit to a Care Experienced Young Adult tomorrow – look up legislation, guidance and advice around housing issues in preparation for the visit. Send emails/texts to confirm visits tomorrow. Write my very important and essential “To do list” for tomorrow!
Comments Off on An Advocacy Focus volunteer talks about their experience
Why did I come to volunteer at Advocacy Focus?
I came to Advocacy Focus because I was looking to expand my experience of mental health services. Volunteering with Advocacy Focus was a great opportunity because it allowed me to experience inpatient mental health services from a different perspective, one that is independent from the NHS. From the outset, staff from Advocacy Focus, were incredibly supportive. They made sure that I got the most out of my volunteering experience. Advocacy Focus recognised that I was in the middle of my master’s degreeand were incredibly flexible and understanding so that I could fit volunteering around my studies.
How does volunteering help you with your studies or your own personal journey?
Volunteering on the ward has given me a chance to be in an inpatient setting, which are often hard to access. It has broadened my knowledge of mental health experiences of older adults and the Mental Capacity Act. This knowledge and experience has been helpful for my studies , my part-time role as a Mental Health Support Worker, and will continue to be helpful for the rest of my career.
The role is centred around talking to the people we work with , listening to them, and finding out what they want and need. Within any service it is vital that professionals recognise the views of the people they work with. It has been refreshing to be able to focus solely on this – as that’s what advocacy is about!
What would you say to other people thinking of volunteering?
I think if you’re looking to broaden your knowledge and experience within mental health, this is a great opportunity – whether you have worked in mental health or not.
Comments Off on An Arachnophobic’s blog to living in a world full of the creepy creatures
Hi, my name is Becci and I am an arachnophobic.
For as long as I can remember I have lived my life in deep fear of the nasty little eight-legged creatures, I have no idea where it came from, which is partly why therapy can be so tricky. I have no memory there being something from childhood that triggered this. In fact, as a child, I would happily watch the cartoon version of Charlotte’s Web and sing Incy Wincy Spider without it causing any distress. My parents haven’t passed this phobia down to me. My mum doesn’t like spiders, but she is nowhere near to what you would call “phobia level”. It also didn’t develop because I’d heard some horrible information about spiders on TV, or in a book, that caused me to fear for my health and wellbeing. It has just always been there.
I am, what you would call, the “on paper” stereotype of a person with a spider phobia, even my self-help book says so. I bought this self-help book over a decade ago when I was feeling very brave and thought “I’m going to beat this”. Over a decade later and I still haven’t read past chapter two, which pretty much makes me a massive failure as far as engaging in self-help goes. Anyway, chapter one of the book defines traits of an animal/ insect phobia as follows:
Sudden and severe panic and fear when faced with the animal– TICK! As soon as I see a spider anywhere near me, I suddenly feel a sudden and sharp jolt of bad butterflies in my stomach and chest, followed by a feeling of becoming very hot and dizzy and losing control of all logic and reason. Depending on how close and surprising the spider is, the event can also result in: shaking, heart palpitations, sweating, crying, hyperventilating, talking to myself and shouting at those around me.
Avoiding the feared animal- TICK! As much as I can, I will avoid all risk of meeting a spider. Have I jumped out of a moving vehicle because I have seen a spider? Yes. Have I refused to sit on a park bench in fear of one of those little red spiders touching me? Yes. Have I spent hundreds of pounds trying to spider proof my house? Yes. Will I ever go on holiday to Australia? Absolutely not!
Focusing attention on the source of the threat- TICK! As soon as I walk into a room I will scan all walls and floors for spiders. I’ve been late for work because there’s been a spider in my hallway, and I have been unable to leave until someone has removed it from my house. Every night when I get into bed, I will pull back my covers and pillows and check there are no spiders in my bed. If there is a spider in the room you can be sure I will find it, even if no one else has spotted it.
So what is the impact of living with arachnophobia?
The reality is that it affects not only me, but also those close to me. I’ve left my then-boyfriend’s (now-husband’s), house in the early hours of the morning because he was unable to find and remove a spider that had crawled up the bedsheets. I’ve woken him up countless times during the night while I check the bed for spiders.
My poor parents don’t get away from this either; when I lived with them, I once made them drive home from Liverpool in the middle of the night, mid-way through watching The Killers, because there was a large spider in the living room. I’ve also walked into their house in such a state from being faced with a spider, that they thought I’d been attacked. I can’t count how many times I’ve shouted at my husband and my parents for not reacting quickly enough in coming to my aid; or when they’ve tried to catch one, and the little critter has gotten away. I feel very sorry for my poor, poor family for having to put up with my behaviour.
They’ve told me countless times that I should seek professional help to combat my phobia. The annoying thing for me is that when not directly faced with my fear, I understand that it’s completely irrational and I will often beat myself up that I should stop being a coward. I know that spiders can’t really harm me, and I am aware that they are probably more scared of me than I am of them. I am hopeful that one day I will finally break free from the grasp of those eight legs that are currently holding onto me.
I am very lucky in the sense that my close family do take my phobia seriously and they are willing to help me. However, often this is not the case with others: it’s common to witness people tutting, rolling their eyes, and staring at me if I’m in public and become distressed by a spider. Many people still won’t even consider that a phobia is a mental health condition (FYI, it falls under anxiety disorder for you sceptics). It’s unfortunate, but it’s true that society still doesn’t take phobias all that seriously, especially animal or insect phobias. The general response I get when I reveal that I have arachnophobia is for people to laugh and say, “oh yeah, I don’t like spiders either”, which is one of the most unhelpful things a person can say to someone with a phobia, as it dismisses the severity of what us phobics go through and experience as part of everyday life.
How do you help someone with an animal/ insect phobia you ask? I suppose that depends on the person. For me, it helps to remove the trigger, or move me away from the trigger. After this reassure me, listen to me if I want to talk about the incident; if I don’t then give me something else to focus on, try to make me laugh or play me a song that is uplifting or makes me happy. If you know someone living with a phobia, have a conversation with them. Take some interest and ask them what works for them, then do whatever that is if they become triggered.
I suppose what I wanted from this blog was to educate everyone that there is a big difference between a dislike and a phobia, and that it isn’t something that should be taken lightly. So next time you see somebody in distress or having a panic attack in response to their trigger, instead of mocking the person, be a human being and help them!
Comments Off on Autism Focus – Understanding the Autistic Inpatient Experience Conference – A month on.
“It’s been a month since we delivered the Autism Focus Conference, what a day it was! It was great to see so many other advocacy providers in attendance who were able to learn about the project but also share their own experiences of working within inpatient settings. There were best practice discussions across the sector, but also collaboration with health colleagues and plenty of take aways for improvements of individual services. I always value being able to spend time with colleagues across a range of health and social care services to develop relationships and improve partnership working in the best interests of the people we support. We hope in the future we can deliver another Autism Focus Conference to shine a light on the ‘real’ patient experience and continue to push for better support for people with autism.” Leanne Hignett, Services Director at Advocacy Focus
Here’s a roundup of the event
March 10th, 2023 marked a significant day in the Advocacy Focus’ calendar. Ellie, our Autism Champion and Manager of our Inpatient Advocacy Service, worked incredibly hard to deliver a thoughtful and impactful day full of eye-opening facts and expert guest speakers.
What we did not expect, however, was for the heavens to open and gift us with a beautiful winter wonderland the morning of the event. Even though we warned our guests to travel safe and leave plenty of time for travel, for some people the journey was just impossible. However, we at Advocacy Focus are a tenacious and resilient bunch, so we ploughed through the snow and arrived at the venue ready for the day ahead!
To make sure that nobody who had booked to attend the conference missed out, we provided a Teams link for delegates to join, allowing them to participate in discussions and activities.
Talk 1- Advocacy Focus Project Pilot Feedback, Presented by Ellie Bradley, Advocacy Focus
Elie began the day with a thought-provoking presentation which provided a summary of last year’s pilot and shared feedback from the autistic people we have worked with in inpatient facilities. Allowing, them to voice their views regarding their care and treatment, along with their experience of Advocacy. What inpatients would like to see change or be done differently in the future was also shared with attendees. The session encouraged everyone to reflect on the support they are providing and what organisations can improve on to make sure that people are moving into the world of the autistic person.
We created 5 videos to include the feedback from autistic patients which played throughout the presentation. You can watch the videos below to see exactly what their thoughts are on the care and support that they receive.
If there was one thing to take away from Ellie’s presentation, it was a powerful quote which truly put one autistic person’s experience into perspective.
“This has happened because people moved into my world. They stopped trying to drag me into theirs.”
Talk 2- Legal Remedies for Autistic People and/or People with Learning Disabilities Within Inpatient Services, Presented by Mat Culverhouse, Irwin Mitchell
Mat outlined the current and emerging legal frameworks which can directly impact autistic people and how these can be utilised to support the person’s rights while receiving care and treatment as an inpatient. Mat continued with the theme of advocating for the voices of those affected by a stay as an inpatient on a mental health ward, and shared powerful quotes from family and friends of autistic people who have been sectioned. This feedback included:
“I am scared they may not come out alive.”
“My son/daughter is in a forensic unit but has never committed a crime.”
“They are not the same person who went into hospital.”
“They are being treated as less than human.”
These quotes alone are a powerful representation of the real issues that happen every day and how not only is the person deeply affected, but also those close to them. They set the tone for why it is imperative that families, friends and those who receive care as an inpatient, understand their rights and the legal options that are available to them.
Mat then shared some facts about the scale of the situation. In November 2022, there were 5,335* reported uses of restrictive interventions in one month e.g., physical, chemical, mechanical, restraint and being kept in isolation.
Mat’s insightful presentation also highlighted;
Closed culture and the role of an advocate and guidance for CQC (Care Quality Commission) staff
Building the Right Support policy paper
Who I Am Matters – CQC report
The options for legal challenge: First-Tier Tribunal, Judicial Review, and Court of Protection.
Mat then outlined what comes next:
Draft mental health bill and implementation of changes
Continued work to hold the government to account for not adhering to previous intended timescales for moving autistic people and/or people with a learning disability out of Assessment and Treatment Units – Issues around Transforming Care and funding
Impact of the government and other bodies (such as NHSE/CQC) action
Irwin Mitchell’s dedicated pro bono legal surgery to provide specialist legal advice and support about Assessment and Treatment Units.
Talk 3- National Advocacy Review, Presented by Kate Mercer, Black Belt Advocacy and Gaily Petty, NDTi (National Development Team for Inclusion)
Gail and Kate invited attendees to be accountable and reflect on what could be improved within the advocacy sector. Some hard-hitting truths from the National Advocacy Review were shared, from people reporting that they felt they were treated as ‘less than human’ to reports of Advocates ignoring the needs of those they are supporting; their talk was a BIG eye opener and a call for the sector to act and to be better.
Organisations were invited to reflect on the standard of their current practices in specific areas. It became clear that a real need was identified that the sector needs to improve on demystifying what advocacy is and promoting the acceptance of advocacy within Assessment and Treatment Units.
The review uncovered some shocking accounts, one professional reported, “I found I had to push and push for people to get advocacy support when I was speaking to people out of our advocacy area.”
The frustration amongst advocates also rang loud and clear, with one advocate highlighting, “Lots of professionals think we’re substitute social workers.”
However, attendees from the sector did identify that the range of advocacy support in local areas was good, but many professionals are still unaware of advocacy and just what it is that an advocate can support with.
Gail and Kate ended their session with a commitment to act. For attendees to make a pledge on how they will take action to improve the experiences of autistic people who are inpatients and be part of the driving force that makes a positive change to the advocacy sector.
Talk 4- Looking Ahead, Presented BY Anna Moran (LSCFT)
To bring the day to a close, Anna from Lancashire & South Cumbria Foundation Trust (LSCFT) shared The Trust’s proposed Action Plan on how they will make positive changes within their organisation and provided attendees with the opportunity to provide feedback and ideas on alternative ways of working together.
LSCFT have developed a new Specialist Autism Team who are working to support wards to provide specialist support in clinical care. It was recognised that the themes highlighted by inpatients require systemic change, to ensure that they are reaching the entire autistic population, not just a few.
To support autistic patients in accessing equitable inpatient mental health care, they have explored the following themes:
Reasonably adjusted hospital settings
Therapeutically beneficial staff interactions
Equitable access to meetings for care planning
Finally, Anna put forward to attendees the all-important question: “What are you going to do differently following today?”
Summary
The day generated a huge amount of thought proving discussion and made it clear that there is a lot of health and social care organisations need to build on to improve the experiences of Autistic Inpatients in clinical settings. The advocacy sector also has a way to go in making sure that the services provided are truly person-centred to meet the needs of each autistic person and break down some of the barriers they encounter in accessing support. What was clear throughout the day though, is that there is a real commitment and dedication from the sector to improve.
The chances are that you are someone, know someone, or have loved someone who is neurodivergent. We think it is important to recognise that autistic people can see and experience the world differently to those who are neurotypical. It is our responsibility to see things from their side, and to step into their world and see things from their perspective.
We would like to thank everyone who attended, you have taken the first step towards action and will make a real difference to the experience of autistic people.
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.
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.
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.
Comments Off on Advocacy Focus awarded ‘Top Employer’ in Mind’s Workplace Wellbeing Index 2021/22
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.”
