Tag Archives: carersUK

Lewisham BAME MH Carer Forum October 2020

Welcome to the October edition of the Lewisham BAME Mental Health carer forum. Its a bit of a mouthful of a forum, but this is the only BAME carer forum I have out of the other 5 carer groups I run.

For the October carer forum, Carers UK were kind enough to lend their Policy and Public Affairs person to the group. Ruby Peacock presented on what Carers UK have been doing for carers up till the coronavirus situation. We were also joined by Dr Siobhan O’Dwyer who is a Senior Lecturer in Ageing & Family Care at the University of Exeter. Dr Siobhan was joined by Artist Leo Jamelli who is working with Dr Siobhan to raise the profile of carers using art. More on that later.

For the forum we were joined by the usual carer members and some newer members, also in attendance was Debora Mo who is Greenwich CCG engagement lead. We were also joined by Nathan Lewis the Community Outreach Manager for Samaritans Lewisham, Greenwich & Southwark Branch. In attendance was Sophie the patient engagement officer from Healthwatch Lewisham who was the third and final speaker at the forum. We were also joined by Lisa Fannon who works for Lewisham’s Public Health and is very interested in how health and mental health is affecting Lewisham’s community especially when it comes to poverty. We were also joined by a governor from Guys and St Thomas NHS Trust who engages with residents of Lewisham, Wandsworth, Westiminister, Southwark & Lambeth on health matters.

UPDATE FROM RUBY PEACOCK.

Up first to speak was ruby from Carers UK. If you do not know already CarersUK is a leading national charity fighting on behalf of the 6 million+ unpaid carers. Ruby kindly attended the forum to update members on CarersUK latest intiatives.

One of the projects that CarersUK have run is called “Entitled harmony voices”, which looks at the experiences of BAME Carers. So as a kind of starting point, CarersUK not only examines the situation of carers, but also BAME carers from the 2011 census. Since the census is fairly old, Ruby admitted that some of the numbers she is presenting on is a bit out of date. She is going to try and talk as well about a little bit of the research CarersUK has done during covid-19.

CarersUK did some research for Carers Week this year looking at the number of carers during the pandemic, not only has the number of carers increased more generally in the population, just because of the aging population, but also because our health and social care systems have been underfunded.

Ruby pointed out that there is even more pressure on family carers and how our demographic will generally have changed. There has also been an increase in the number of carers more generally and she estimates to be about 17 % of the population that being 9.4 million people.

She also found 4.5 million people became carers during COVID-19, because there were people who were shielding who weren’t necessarily needing care for. There were also people who had COVID to add to the required care afterwards.

Ruby would estimate rather than the being half a million BAME carers, we would say it was closer to about 1.3 million carers at the moment. And so in terms of kind of what the demographics look like, there is a spread about the amount of carer that people have provided. So for the majority of people whether they are BAME carers or the general carer population are providing kind of zero to 19 hours cqre, there are the lower levels, about 15% of carers provide between 20 and 49 hours of care, and about 21% provide over 60 hours, which is really in significantly higher numbers. Ruby estimated that about 10% of the BAME population are caring around the clock.

Ruby continued that there are a couple of things that we know about the kind of carer population, she was going to talk a little bit about what we know in terms of experienced BAME carers more generally.

Ruby knows that carers are often in financial difficulty. And not only does caring come with additional costs, whether that additional heating costs or fuel because of carers transporting people to places in different ways, but also within the house, and with that paid for services.

CarersUK are also seeing that some services that used to be provided arent provided any more. So in the end the carer and the person being cared for or having are to cover costs out of their own money. This is often confounded by the fact that often juggling work and care can be really difficult. So we know that there’s about 1.2 million people who are caring who are in financial difficulties and we would classify that as inequality. Ruby mentioned that one of their ongoing campaigns is to kind of raise carers allowance, which we think is the lowest benefit as of its time, which she feels is just simply unacceptable in terms of providing that support for carers needs.

Ruby reminded us that carers struggled to juggle, work and care, and they found in research that 600 people a day give up work to provide care. It was mentioned that during the COVID, CarersUK have seen the increases being a real pressure on people being able to manage their caring responsibility alongside local services either stopped, or severely reduced.

There are also a large number of people shielding, and although some carers could access a furlough scheme it led to some really different experiences with their employees about what they were and what they thought what they needed.

Ruby pointed out that carers are often more likely to be lonely and that part of that is because it’s really difficult to talk about your experiences with different people. It can be really difficult to access breaks, which means you don’t have the time to be able to invest in your relationship, plus carers can be in financial difficulties, which means you can’t access the same sorts of activities that the other people can.

Ruby spoke at length of the other difficulties carers were facing, a good point was on the real emotional impact that people were on under in the month of April. One of the things that CarersUK found was that the majority of carers and 60% of BAME carers said they felt like they were reaching a breaking point. She felt that one of the things that it’s really important is that we don’t put people in the same situation they were in April. It was mentioned that not only were people incredibly stressed about caring safety for themselves, and keeping themselves and the person they care for safe, but they were also taking on extraordinary hours and CarersUK think its not possible for people to care for long period of time.

QUESTIONS FROM MEMBERS

One of the members thanked Ruby for her presentation, she felt a lot of it resonates with her personally and she would like to mention a couple of things that definitely impacted her during COVID. The carer member mentioned she was caring at a distance and she was very glad that Ruby mentioned the situations long distance carers face.

The carer mentioned during COVID, the person she is caring for had a fall and that he also went out well. He was taken to the hospital, by ambulance and so on. And because he had also has some underlying health issues, the hospital decided to check him out thoroughly. And lots of appointments were made some early in the morning. Plus the fact that he has a special needs, So she needed to be with him as his carer at the hospital during these appointments, to be able to hear what the consultants are saying to be able to ask questions, to give them his history.

Ruby responded that we don’t think the NHS does enough to recognize the role of carers and we’re also incredibly concerned about the change to government policies on hospital discharge, which dont provide and don’t suggest that there should be a carers assessment as part of the discharge. It is important to know who the family or who else is in the home and who will be providing that care. There is still a long way to go for Acute NHS hospitals who are slow to be carer aware.

Another question was on older adult carers. The carer was concerned that when Ruby sends off information to the government regarding younger carers or adult carers. He feels those carers will get support, but older carers will be left out. He was wondering if carer data was broken down into 3 categories as in younger carers, adult carers and older adult carers. Ruby mentioned CarersUK focuses on adult carers, but young carers tend to be the focus of another national carer charity, that being CarersTrust. I suspect AgeUK might focus more on older adult carers. Ruby also mentioned breaking down the 6 million carers into categories would be a massive task in itself.

Another carer wanted to expand on the issue of completing online surveys. She wanted to talk about access to digital services, and or probably people’s capacity to actually complete forms online. She asked if there something about the care coordinator sitting down and having some way of completing that form on behalf of the individual. Because whereas we used to be sitting in an office, and then somebody can complete it for you. And that was fine. but we’re now in this digital new way of working, not everybody has access to being on zoom, not everybody has access to the internet and not everybody has access to be able to print an application or form of an insult

Another member raised the point that the problem that is facing their NHS trust is that because the black and Asian people are so used to the inequalities within the services. They’re not even interested in filling out the forms to be quite honest. So we now need to find a way where there is less talking and more action.

Another carer gave an example of her experience as a long distance carer, while another carer member felt BAME people were being put in a box, but not categorised enough from being different from service users. There was still a lack and understanding of the needs of BAME carers.

With that I thanked Ruby for her time and thanked her for representing caresUK and coming to engage with BAME carers. I mentioned that I hoped that we can hear from CarersUK in the new year and continue relations with the good work CarersUK does in advocating and raising the carers agenda.

NEW PROJECT FROM EXETER UNIVERSITY – Dr Siobhan O’Dwyer presents

Dr Sioban wanted to talk about what they did around hearing from carers experience of COVID. They had a group of carers who they gathered right at the beginning of lockdown and they interviewed them every week for 12 weeks. So every week between April and June they heard about carers experiences. They are also going to go back in January as part of that research and that they have working really closely with different government departments, including the department of health and social care, department of Work and Pensions, public health England, CarersUK and also The House of Lords.

Dr Sioban wants to put together a briefing to each of those government departments and the various charities so that they have that information. They felt they done quite well with that project in terms of helping policy makers and and charities and local authorities understand the experiences of carers.

What she feels she hasn’t done too well is to actually engage the community and help the community see what a brilliant job carers have been doing through this time, and also have tough they’ve been doing it. And so in order to sort of shift to that focus in and work with the community, she recently got some funding from the council to do some large scale art installations to debate the challenges that Carer’s face during this time, but also to celebrate the amazing work carers do and the incredible bonds carer work so hard for the ‘cared for’

One of the things she really wants to work towards is to represent and celebrate BAME carers and carers from ethnic minorities, because she recognizes that they’re not represented in a lot of the research on carers or on a lot of the community discussions.

ARTIST LEO JAMELI PRESENTS TO THE FORUM

Lee mentioned in 2019 where he worked with Dr Catriona Mckenzie and Dr Sioban, the project they worked upon was an art projection of his own experiences of care. The art image was of his mother taking care of his father. The image was hand drawn and shows the human endeavor to continue to care. The art projection is called “the Invisible Carer”, which is a large-scale light projection designed to celebrate the often unheralded and crucial role of family carers.

Leo mentioned how he felt to portray mother’s experiences of care, but just in a small kind of loop. So it’s this idea of she was having to carry him instead of losing him, through also, with kind of medical health decline in slipping through her hands, but then finding the strength that most carers find

You can see the art projection in the link below.

The invisible carer site

what Leo hopes to do these projections is to bring much more public awareness about care, because it seems generally in health services, everyone does a good job, but it seems like kind of social care the poor cousin of the NHS. Leo feels it doesn’t seem to get as much public attention it deserves.

Leo explained more of the visual representation of the art projection and how large the scale of the projection. He mentioned if you look in the back distance, you can see someone in a restaurant, so it kind of gives you the idea of the scale as they are about three to two story is high. The focus for this year is to get a projection of a BAME carer from London to be involved in the new art work, which members were very interested in taking part.

CARER MEMBER RESPONSES

One of the members was interested on how long is this project for? because its possible that covid-19 lockdowns can affect the funding of the project. It was however stated that funding has already been secured for the project, only the weather could cause any disruptions when the artwork is projected on to a building. The aim is to project the artwork in Southwark.

HEALTHWATCH LEWISHAM ENGAGEMENT

Next to engage the BAME carers forum was Sophie from Healthwatch Lewisham. She is the patient experience officer for the organisation. The aim for her was to speak to the group directly to get feedback from health and social care services.

Sophie explained more on healthwatch do. Basically Healtwatch is the patients champion for people who use health and social care services, so that can be carers and relatives and patient service users. Basically Healthwatch takes feedback on hospitals, GPS, opticians, dentists, community health and they basically listen to what’s going well, what could be being done. At the end of every quarter, healthwatch will analyze all that feedback, and then produce reports which is passed on to the people who have the power to make those changes happen.

Many carers feed back about pharmacy issues and queries about hospitals. It was empowering to heave healthwatch engage with carers and I hope we can continue to have engagement from such a prominent organisation.

This concludes our update from the October BAME carers forum. I also want to note that I have released a carers news item. To subscribe click on the link below and select subscribe to get updates of the latest carer news.

https://mailchi.mp/f11c6f942a2e/carer-news-from-a-caring-mind

CarersUK National Summit Review

Welcome back to another one of my blog posts. I guess I have not done a carers post for a while, so it seems fitting to do a post on the CarersUK National Carers Summit, which was held on the 13th of Novemeber 2014. This was an impressive Summit and I do admit the Clifford Chance building is certainly stylish.

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I am sure I may have mentioned CarersUK in one or two of my posts already and you might have actually seen the CarersUK link off my carers site list, but if you are still not sure what is CarersUK all about. Let me point out a bit about the organisation.

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Basically in a nutshell CarersUK give expert advice, information and support to all different types of carers, but not only that. CarersUK fundraise, the lobby the UK government, raise awareness of carers and try to support other carers to get involved in the carers movement.

Here is a brief video about CarersUK.

CarersUK have several important messages which I heard a few times at their National summit. These being :-

“You do not have to care alone” or “If only I had known” and many more important motto’s for carers.

Now, I am a member of CarersUK myself and often pop on to their carers forum every so often. I have even phoned CarersUK for advice and even if I did not get the advice I could have hoped for, then at least someone was on the other line who at least listened to me.

So why did I decide to take some of my precious carer’s time and head off the their national summit or AGM? Well there were several reasons.

1. CarersUK is BIG, if you have been a carer for a while then you should have heard of them.  I was very curious to see what CarersUK have been up to and wanted to experience what their AGM was like.

2. I also wanted to meet and see how many other carers turn up, I felt if there was a chance to form a network or make a connection then it has to be at this event. I have to be honest and state it is not so easy to get a majority of carers in one place. Why is this? Carers just do not have the time. Time for one thing is a precious commodity for carers, but if I at least shook a hand of another carer or spoke to a carer then at least I felt I was not alone.

3. Other reasons I wanted to attend the event is to gain information and to be part of the special occasion. I could not attend the previous event because it was fully booked, I was not happy about this, but this time I was not going to miss this AGM. I did not specifically go there to ask questions, I felt it was just nice to be there and feel part of the carers movement, it was nice to belong and to not feel alone any more.

There were numerous others of reasons why I wanted to be there, but anyway what happened at the AGM? What could I remember?

Well I met up with long time carer and carer representative Bridget Jones who has been working so hard in the field to spread carer awareness at the mental health trust South London and Maudsley, both Bridget and myself planned to attend the event a while back.

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Bridget and myself were so excited to visit the building and hear of any new developments, but in the back of my mind I knew there were going to be some difficult questions asked of CarersUK. For one I have noticed the austerity measures and cuts beginning to bite into social care.

The thing is, carers are trying to protect the vulnerable, which is their loved ones, but such cuts, bedroom tax and austerity measures always hits the vulnerable first.

As I walked into the building and collected my pass, I was impressed by the space and size of the area. The staff were welcoming and very friendly, I even bumped into fellow South London & Maudsley carer Governor Angela Flood, plus I also managed to shake hands with Heléna Herklots who is the CarersUK CEO as she greeted other carers into the auditorium, which I felt was one of the highlights since I know CEOs of big organisations can be distance or very busy to notice everyone.

Eventually Brigdet, Angela and myself sat down to hear the welcome from Professor David Greyson the chairman of CarersUK. He gave a very good speech, but a fair bit of my attention was on other carers and the surroundings. I also noticed some excellent and very challenging questions about the financial situation of carers.

We also got to hear from Heléna who gave a review of 2014 and what carersUK have been up to. I picked up a few points and those were

– How CarersUK have managed to increase their advice service from 2 days to 5 days a week
– Developed more training to NHS Staff
– Produced an e-learning package
– Plus producing leaflets for carers since not all carers have access to the internet
– CarersUK have increased membership and one of the major members is NHS England, which I was very glad to hear
– CarersUK have also made an impact on the Care act by getting parent carers included in the care act.
– It has also been a difficult year, as I have mentioned before. A lot of carers have been hit by bedroom tax, social care cuts and more cuts are on the way.

One thing that kept popping up at the AGM is that a number of CarersUK centers have closed due to limited funds or not being able to adapt systems CarersUK has tried to set up. It is important that carers who have had issues with CarersUK had to be heard and to be honest I expected the tough questions and statements to be raised at the AGM.

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We then had a 10 minute break where I spoke the Emily Holzhausen who is the director of policy and public affairs for CarersUK. I have met Emily quite a few times and she has spoken at the SLaM family and carers listening event a few times. I can certainly say that Emily works very hard for carers since it can be difficult to get someone of her stature to speak at such NHS trust events.

I also took time to make a pledge off the carersUK pledge wall and hoped to do just a bit more for CarersUK, but I know my time is very limited since not only am I still caring, but having to hold down a job and push forward carer awareness in South London and sometimes beyond.

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After the break we got to hear from more carer questions and I noticed another carer Kelvin Wheelan asking some interesting, but tough questions at the CarersUK board.

There were also questions of the trustee members and stating if they represented carers on their gender and race, which is a very difficult balance, but I did agree with the counter argument that if there were such criticisms then other carers should put themselves forward.

Next to present was Gavin Macgregor Director of communications and Engagement, plus we heard from Rucksana Mahmood who is the local ambassador in Glasgow and a member of the Carers Scotland Committee. We also heard from Denise Lee who is one of the CarersUK Adviceline volunteer who spoke passionately about her role to carers. We also got to listen to Caroline Toll who is another CarersUK ambassador in Somerset.

Unfortunately I could not stay long for the carersUK AGM, but I did get to listen to several poems from Cheryl Moskowitz and also from the short story winner Val Ormrod. As I write this blog now, I can still hear their voices as they read out their stories and poems from the AGM.

However, this blog is not mainly about what happened at the AGM, I wanted to put my 2 cents about the carers movement, I want to put my feet on the side of the fence, but which side?

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Well throughout the AGM, I did hear tough questions being asked of CarersUK. The thing is big organisations have big responsibilities and I do notice CarersUK shoulders are broad, but I also know that carers can complain and are not always silent as one may notice.

There are of course millions of carers who are isolated and do not know of their role or do not get any support, but I could not help notice some unfair questions being thrown at CarersUK. Yes, I am sure some of the CarersUK staff get paid well for what they do, but I still feel that job is not the easiest of roles. I also notice CarersUK need support as well, but from who? you ve guessed it, us carers.

It is a shame that carers in the UK have to muster up more energy and determination to help the carers movement, but I feel its not just any carer can take up that role. I feel it takes a carer who has the energy, spirit and heart to give not only care for their loved ones, but also to support their carer organisation or centers.

If I was talking about the banker movement, then yes, it would be far easier for other bankers to support their financial sector, but alas it is us carers having to spread the message.

Its not that CarersUK is forcing people to help in the movement, but I am aware that if we are to be heard on our struggles then we all need to work together, but I am aware that the system does not work for all carers and there will be tough decisions ahead. Carers will be let down and yes CarersUK have struggled to be there for some carers, but I also know resources are hard to come by.

So I guess the side of the fence I am sitting on is to support CarersUK. I feel it does no good complaining about them or blaming them for too many things, which of course some things are clearly out of their control.

Plus thinking back to the AGM, I cannot remember any carer in the audience thanking carersUK for their hard work that they have done so far, although I could be wrong since I had to leave around lunch time.

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Overall I was impressed with the AGM and I felt all speakers spoke from their heart, which is what I want to hear most of all. I want to see the passion in the movement, I also want to see carers rally to support not just carersUK, but many other carers organisations as well. I want carers to link up and support other carers. Us carers can support fellow carers by listening, giving advice and pointing to other carers where to find good resources.

I wish to thank all CarersUK staff for running a successful AGM, which kept to its time limit and keeping my interest (which is not an easy thing to do). Us carers need to connected more than ever now because we are at risk due to cuts and the care bill although promising has not been tested in an uncertain society. With big changes in politics, the NHS and the community, we need the big organisations that cannot be so easily ignored. Us carers can usually be ignored because we are not often heard, we just continue to struggle on caring, but rest assured when carers speak, I know carersUK will amplify our voices.

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Let our caring voices ring out “We do not have to care alone“.