We talked to her about the work of POhWER, the personal stories of those they’ve helped and looked towards the future of advocacy in a post-COVID world.
Can you tell us a bit about your personal journey, what’s motivated you and driven you in your career?
Sure, so I suppose my reasons for being at POhWER start probably 30 years ago where I started my volunteering career. Prior to joining the charity sector seven years ago, I spent 20 years in the corporate sector and the entire time I lived a little bit of a double life.
I had a corporate job, very buttoned-down during the day, and then I was leaving work, and back then I was living in New York. I was doing work in social care, particularly around HIV and AIDS, and supporting beneficiaries in those areas.
After 20 years in corporate life, I started to really think about my impact, my career and what I wanted to do. I was also grappling with my father, who lived with obsessive-compulsive disorder (OCD) and schizophrenia most of his life.
I suppose what I didn’t realise is, as a young teenager and as a young woman, I would have acted as an advocate to him – helping to make sure that his voice was heard whether that was in the health care system, whether that was in immigration with his employer.
Advocacy is something that has come naturally to me and something that’s personally impacted me as well. I also live with mental health and disability so I grew up knowing depression, understanding dyslexia and then after 9/11 – I was a 9/11 survivor – I inherited PTSD and hearing loss. So 95% of the hearing in my left ear went because of what happened that day.
I suppose, coming into the charity sector seven years ago and working with organisations like Stonewall, Marie Curie, Age UK, Alzheimer’s, Children’s Society – really important for me professionally to address inequality in society and help socially excluded people is one that comes very naturally to me.
So you’re currently Chief Executive of POhWER, can you tell us a bit more about power and the mission that you have?
Of course, POhWER was established in 1996 by a group of six founders who founded the charity around a table at Harpenden Town Hall in Hertfordshire. POhWER stands for People Of Hertfordshire Want Equal Rights, although today we are a national advocacy charity.
All of our founders at that time have disabilities and were fighting social injustice and challenges in their lives. Today, power supports marginalised vulnerable and socially excluded people through charitable work.
This past year, we have supported 55,000 people through one-to-one advocacy services and around 253,000 through our Community Help Hubs, which provide information and support. As well as over 400,000 people through digital health advocacy information resources that people can download to help themselves.
We specialise in mental health, impairment and disability, but we don’t exclusively work in those areas so really anyone who is in need of advocacy in their lives could work with POhWER. To give you an idea, 38% had a mental health condition 24% were over 75 and 10% had dementia, 3% have autism – just to give you a few statistics.
24% of the people you support are over 75 age group. Tell us a bit more about the particular needs of that group when it comes to advocacy and advice.
If I think about beneficiaries in the over-75 age group, they present with particular needs. Typically, in relation to a lack of issues specific to mental capacity, so sometimes there’s an overriding need to protect a fundamental human right. For example, those who might be living with dementia.
This is often when decisions are being made by health or social care professionals on how aware they should live their life or what treatment they should receive. We advocate and also support people over 75 to live their lives free from harm or abuse.
We support them to speak up, or speak for them, to raise any safeguarding concerns that might be happening in a care situation. We help to ensure their voice is heard when the decisions are being made by someone else, or are put in place without their wishes being known, also protecting them from abuse.
Advocacy really is about supporting access to support to appropriate health care services and social care information. It’s really all about maintaining independence and choice so that is a high priority for our beneficiaries and service users over 75.
Could you give some examples of the type of support the over-75 groups might be trying to access that you could help with?
Sure, you may know this and this is written into statutory requirements with local authorities. We work with 83 local authorities around the country. The principles of advocacy is that organisations must involve people in decisions made about them, their care, their support.
It doesn’t really matter how complex those needs are or what environment they happen in. They have to weigh up their feelings and wishes. So, the things an advocate can help with to ensure voices are heard are things like care needs analysis and assessment of a carer, a carer’s environment, advance care plans, including things like do-not-resuscitate orders, and also safeguarding.
Something I would really encourage your readers to consider and insist that they have access to relevant information. They have their questions adequately answered and heard, and make their views known about decisions around their care.
You’ve worked for the Alzheimer’s Society in the past. Do you have any advice for people who are trying to get access or social care support for those particular conditions?
Many of your readers will know about the Care Act of 2014. For those who don’t, this says that local authorities have to carry out an assessment for anyone who appears to require care and support – regardless of their eligibility for state-funded care or not.
The key to understanding this is they have to focus the assessment on the person’s needs and how they impact their well-being and the outcomes that they want to achieve through their care.
It can sometimes get confusing and it can be a fragmented process to get the right support. So, if your relatives are needing a mixture of health and social care and it’s not always carried out as an integrated needs assessment. That is one advice we would give, this should be carried out looking at integrated needs.
The idea here is a very much person-centred care, not fragmenting that. An advocate can help to make this process less confusing, less complicated and also help either families or people living with dementia to navigate through it. I know it can be really hard to know where to turn if life is getting difficult to cope with. An advocate is a really good place to start.
GP practices also have linked worker schemes. You may have heard of social prescribing, we work hand-in-hand with social prescribers and community navigators as well so that’s another piece of advice.
Care information and advice
What would you say to people who feel like local authorities are there to make decisions for them and what advice would you have for them?
I’ll talk about the rights they have. Local authorities must involve people in the decisions that are made about them and their care, support and referral pathways. It doesn’t really matter who they are, but they have to weigh up their feelings and wishes.
This could be in care needs analysis assessment of care or carers, or medical or health care, or health care access, advanced care plans, or safeguarding. I would really encourage your readers to insist they have access to the relevant information, have their questions answered and make their views known.
Could you tell us about the impact you’ve seen so far of COVID-19?
I think one of the things we observed before COVID-19 came along, before the lockdown, is there were a number of people in society who are vulnerable, marginalised, and socially excluded.
If you think about each of us as human beings, we have a number of lived experiences and characteristics. I think COVID-19 probably exacerbated some of the isolation that the socially excluded and vulnerable people had, some of the circumstances that place them at different risk factors or harm. But, also, if you think about where the focus was by the UK government these last few months it was on preventing transmission of the virus.
It wasn’t necessarily taking into consideration that by pooling resources to deal with the virus and prevent transmission, a lot of people did not have the care that they needed, access they needed, information that they needed. Or, that they could have been exposed to situations, like in care homes, where there weren’t the right provisions made.
I guess the issue has been it wasn’t clear who to go through for what. I think people were possibly treated as labels, not human beings, but also there were a number of easements that were created through emergency acts like the Coronavirus Bill, which created a really impossible situation for human rights in health and social care.
The Mental Capacity Act, for example, was also not written for COVID-19. What do you do when COVID-19 presents you with these situations in terms of access, inclusion, marginalisation? But also scenarios that were never planned for before – such as COVID-19 tests – or testing in mental health wards or care homes.
A COVID-19 test is an invasive procedure. How does one interpret an individual’s wishes and feelings when mental capacity is not there to perform a COVID-19 test, or to assess health? It’s been a very interesting situation, not entirely joined up, and really problematic for people with mental health and disability.
Have you heard any instances where people are struggling to get that support or any stories that you’re willing to share around that?
Yeah, so what has been really interesting is we have seen a sharp increase in demand and volume. Not just to our helplines but also to our one-to-one advocacy. Over the last two months, we were seeing nearly 7,000 people a month in April and May – which is significantly higher than in previous years.
The situations that are presenting themselves are not just around health and social care; because of the state of local government services and NHS services, people are having issues with basic needs like food parcels. A lot of people have been furloughed or lost their jobs so there are some basic needs situations going on, housing, again food parcels, access to health or care.
Digital exclusion comes into this. In a world which is mostly virtual, how does someone who’s not computer literate actually get their information? I think the kind of things we’re seeing is not really an appropriate provision for people with mental health and disability.
You mentioned digital exclusion – do you see that coming out more for the over-75 groups that use your support?
Well, if you think about digital exclusion, it’s not just over 75s. For example, if I’m dyslexic or perhaps I have lost my sight and I am reliant on a software reader.
If information is being put out let’s say through the door – so I know my local council will just drop pamphlets through the door – and, again if I was visually impaired, I would have received any of that information, but it may not have been made available in an easy read format.
I would actually argue that a lot of the information during the lockdown hasn’t actually reached people. We talked about how big this problem is – there are 13.9 million people in this country living with mental health and disability, that’s 22% of the population. A proportion of which will be digitally excluded by the way that information is put out onto the internet.
I would sort of question really how much of that has reached the most vulnerable people or socially excluded people. I think it’s not a problem that’s specifically for the over 75s, I think it’s a problem that really cuts across society.
POhWER supports hundreds of thousands of people a year. I wondered if you had any individual stories from the people that you’ve helped?
One story that comes to mind is Yusuf’s story. Yusuf was a client of ours. He emailed HertsHelp, which is one of our help hubs, to ask for help. An advisor Michelle called him back to discuss these issues. He tested positive for COVID-19 three days before and had been advised to isolate for seven days.
Yusuf said he had bipolar disorder and he also disclosed that he had a manic episode recently. Our advocate, Michelle, determined from the discussion that the police had visited Yusef but he had not been arrested, so there were a number of circumstances going on.
Yusuf’s first language is Arabic. Michelle spoke very clearly and slowly to help Yusuf understand the support which was available to him, as he has some command of English. She also checked his understanding at various points.
Our advocate identified that Yusuf had also money worries – he was building up debts. She was able to make a referral to Citizen’s Advice Bureau for budgeting and financial advice and help him with his landlord – but also helped him to access a mental health worker to support him.
Through the referral to mental health and mental support, an advisor agreed to speak to Yusuf the next day. She also provided him with a number for information access at HertsHelp.
Now, I’m using Yusuf as an example because I think it’s a really good illustration of how POhWER works again in this person-centred way, Yusuf had a number of things going on and our advocate was resourceful enough to look after as many things as possible, connecting Yusuf with resources that could actually help him to navigate through his issues.
I think one of the really special things about advocates – and one of the special things about the people who work at POhWER – is they push on closed doors for a living. They clear paths and they’re there to empower people to make choices that better their lives. I’m really, really proud to be part of this organisation.
Five years in the future, what do you hope will have changed the people who are currently vulnerable, marginalised or struggling to get support?
Firstly, I’m quite ambitious. I hope that we reach many, many more people and tackle some of the barriers they’re experiencing. Right now POhWER is the largest social care advocacy organisation of its kind in this country but we still are not reaching even enough people out of that 13.9 million I alluded to earlier.
The second is, I’m hoping over the next five years some of the stories, our case studies, our work, some of our campaigning, will help to change hearts and minds in the general public. Hopefully helping to reduce some of the negative attitudes and stigma around mental health impairment and disability.
I’m hoping we influence public hearts and minds for the better. I’m hoping we address more root causes of the problems – advocacy is often there when social structures and powerful organisations fail people. I’m hoping that rather than just cleaning up the mess once it occurs, we can have a seat at the table, helping to address either the law, the circumstances, the environment – the things that create the problems to begin with.
I’m hoping, over the next five years, we have a better understanding of some of the unmet needs that our service users have. I think it’s always a learning journey, through all the cases we have. However, POhWER has what I would call a very fleeting sight of someone’s life.
We’re there when they’re in crisis. We don’t necessarily follow the whole story – so the more we can piece together about someone’s unmet needs I think the better we’ll be equipped to support people.
I’d like to see society more focused on the person, not the label. Also, that advocacy hopefully is less needed because all the problems I’ve described are being resolved.
What kind of work are you doing with POhWER, or are you hoping to see more widely, that would help that matter?
Sure, so right now I think although POhWER works with a number of different areas. Not just health and social care. We also may work with housing, we may work with immigration, and other agencies. I think we’d like to start sort of moving into other areas.
If you think about each of our unique lives – we can be parents, we could be carers, we could be children, we could be employees – at any given stage of our life. I think we’re looking to create advocacy opportunities in a lot of those life’s pathways so that’s sort of the plan for the future.
You also spoke about systemic and structural changes and advocacy as a route when the system has failed in some way. Do you see hopeful green shoots in that area?
I see recognition by the Government in the last few months and weeks, particularly around COVID-19. For example, some of the parliamentary consultations that are out there and some of the studies and enquiries our Government has commissioned really relate to people’s experiences under COVID-19 and help to broaden understanding about what’s happened.
A lot of the conversations are now looking at rights. How did different laws, procedures, safeguards either protect or not protect people? I think the right questions are being asked. I know the Office of National Statistics has been tracking, for example, COVID-19-related deaths and how these impact BAME communities, or people with learning disabilities. I think we’re really in the analysis phase right now.
I’d like to think that this focus on COVID-19 post-lockdown and post-pandemic will continue and this focus on vulnerable, marginalised people again will continue. Not just under the banner of COVID-19, but how we can sort of better society and again remove barriers.
I think part of it is about hearts and minds, I think there’s a big responsibility on us and also the general public to be writing to MPs, to be writing to ministers, and saying this is really important.
If we want to address inequality in society, whether that’s inequality in services or the laws that are put out, it’s really up to people to go out there and demand better circumstances for people’s mental health and disability.
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