Welcome to the July update of my Joint Southwark & Lambeth Carers forum. The forum is focused on unpaid carers who care for someone suffering mental ill health.

Speakers for the July forum were

Carol Ellis: Promoting her son’s book regarding surviving suicide

MP Helen Hayes – Speaking about carer updates for the boroughs

Dr Natasha Tyler – An associate Researcher from University of Manchester

DR NATASHA PRESENTS ON HER RESEARCH.

Dr Natasha started off by saying that as a researcher from the University of Manchester at the patient safety Translational Research Center. She has been working with Matthew probably for about three or four years now. He’s been involved in quite a bit more research and she was just going to give a little bit of an overview about involving carers in quality and safety research. Dr Natasha wanted to speak a little bit about involving carers in quality and safety research.

Dr Natasha is interested in transitions of care, which is the movement of patients through the health and social care systems. She works with different stakeholder groups to develop interventions which might find solutions to different problems. She has developed consensus on key topics and tried to highlight the patient and caregiver recent academic work. The Key groups that she works with at the moment are mental health and carer residents. So some examples of some research she has been doing recently are interviews with stakeholders. When she is studying a topic, she tried to get lots of different perspectives, so carers, patients, healthcare professionals, charities, academics, and for the two things she has been studying most recently has been safety and discharges from mental health hospitals, specifically in transfers between care homes and hospitals.

Dr Natasha has also been working to develop a care and measure of safety at care homes. Where input from users can be picked up on a question they can fill out. To assess how safe the carer feels their loved ones are at that particular care home. This is in terms of some key patient safety priorities and research, which looks at how safety is perceived by different groups. This looks at the differences between what safety means to carers and service users as opposed to perhaps health care professionals. So this is a paper that’s just been published, and it’s called, “What does safety and mental health care transitions mean for service users and over stakeholder groups”. The key difference in this was that safety and mental healthcare transitions was perceived differently by service users and carers compared to researchers.

So what’s the healthcare professionals and researchers focus on the clinical aspects of safety? This tended to be things like suicide, self harm and drug misuse. Services users and carers are much more interested in social and human behavioral things. So loneliness, emotional readiness for discharge, and the way the services work together. So in professional communication after discharge, these are all the key things that matter to service users and carers much more than the traditional safety indicators that used in research.

Dr Natasha is not saying that these aren’t important, she just found that safety had a much wider definition of safety for what service users and carers percieved. This research is just in the process of being published. So this was about the effect of COVID-19 on quality and safety and mental health care transitions.

Carers described feeling left out of communication regarding discharge planning and left alone to cope with family members who were not necessarily ready for discharge, because the initial perceived rapid discharge of service users at the beginning of the pandemic is distressing. There’s a quote from one of the carers, which was partly used for the paper’s title.

The carer went on to say “It was also sudden, because we literally had a phone call on a late Tuesday afternoon saying that he was being discharged and they asked us to go and collect him. He was handed over to is that a call? I asked. Well, I asked specifically, is this due to COVID? And they said, Oh, no, literally, it was all quite surreal. And I came to the psychiatrist saw from his office, and he came out to say goodbye, and good luck, it was all a bit odd.”

So this was data that was collected at the very start of the pandemic where different groups receive safety and care transitions and in particular, and there’s lots of really interesting insights from the carers.

So for Dr Natasha this is why this kind of involvement is so important in quality improvement research has provided really important insight into health system processes and how it made them feel when it involved challenging situations with their loved ones, but still they are often able to recall and articulate details in a different way to service users who might be transitioning through healthcare systems at a time of crisis or distress, or human capacity.

RESPONSE FROM CARER MEMBERS

One carer member responded ” She thinks what is left out is the impact it has on the carers, because when you have your “loved one” in hospital for a certain length of time, and then all of a sudden you’ve been told that they’re going to be discharged. People don’t realize the anxiety that it brings onto the carers, because in the groups that she runs, which is the carers group, she is always hearing that they don’t get access to where their loved ones medication is, what is the next step for them. So she thinks it’s really important that carers are involved in terms of their well being, because if your loved ones in hospital and has to come back home, then that also brings on some anxiety. So it’s about giving the caregivers the support, and signposting.”

Another carer member mentioned “The whole problem with psychosis is lack of insight into illness and if the inpatient facility doesn’t have an insight or an understanding of what’s gone before, and what the carer has been through, then there will be no actual understanding of the reticence that, I mean, even accepting, you know, your very Dear loved ones back home. People feel very cautious about this. It’s not that you don’t want them home, but you want them home well, so that the whole situation doesn’t escalate again, and you have to go through the whole thing again, because that is traumatic, for a lot most carers, it’s traumatic, the sectioning process is very, very hard.

Carol Ellis speaks about her sons book

Carol who is an unpaid carer for her son wanted to tell us about a book that came to life while the lockdown, which was all about how her son wanted to write in order to help others, like himself who might be suffering with anxiety and depression. It’s a book that took every ounce of strength for him to actually write and then show that there’s a way forward with mental health, in where you can talk to people and can open up to people. The book can provide you with tools which help you along the way.

Both Carol and her son felt that it was it was worth actually putting putting pen to paper. Her son actually got this book published in Amazon, and they are very proud of getting this far. So the book is called “A gentle breeze” Unfortunately Shaun was not at the meeting to talk about it as he has to really dig deep to explain the story. He has tried to kill himself a couple of times. So Shaun had to write about his suicides as well. Carol explained in the sense that he’s a lot better now and is doing very well at the moment. So he’s working hard to help others, he can’t work, because he’s so is not well enough panic attacks, with the anxiety and the depression. So Shaun thought the best way to actually help others and be a carer without actually working as a carer was to write his experiences down.

Carol explained that the book is a very powerful book that will help carers as well as the cared for, because it shows just what the person is going through doing the journey at this stage. Sucidality is known as being the silent killer as depression. Too many people lose a battle with it so he’s trying to get them to get the help they need. Shaun really hopes that this will change things for the better. Carol wants to get it out as as much as far as they can to as many places. She has been in touch with her MP recently, and the MP is going to take it to London with him and talk about mental health issues to the constituents as well, Carol thinks that it will be quite a powerful way of dealing with it. Carol just wanted to let us know that this is what Shaun is doing and he is a very proud man. Because it was hard. And it was hard for her to push him all the way. Because he wanted to give up a number of times. The book wasn’t easy to get publicized if you don’t realize just how many battles you have to go through to get to get things publicized.

MP Helen Hayes speaks

Helen thanked Carol for sharing with the book with the group. She felt the book sounds like an amazing achievement for Shaun to have written about his experiences. Helen feels that one of the most significant things in terms of just breaking down stigma around mental health is and building understanding is people being open to talk about what they’ve been through themselves because out of that comes the realization that mental health struggles are extremely common and tough.

Helen mentioned such issues touch every family in one way or another and the more we can normalize that conversation, the more we can make sure that people are getting the right support and that services are designed in the right way. Helen mentioned that there is a real opportunity to make a difference in terms of how to get the word out. She felt it sounds like we are doing a really good job of getting around different mental health forums around the country. Helen hopes that Carol’s MP will be able to help with getting the word out in Westminster, perhaps they could help with doing some things locally because she thinks this is all about that critical mass of people who’ve heard about the book and read about it, and then pass it on regarding the knowledge and recommendation to lots of lots of other people as well.

Helen was really glad to be with us again and thanked us for all of our important work. she felt great to see that matthew was involved in many more mental health carers forums in different parts of London as well, compared to when she last met him, Helen wanted to talk a little bit about some of the things that happened during the lockdown that have affected carers. Helen also mentioned that to be honest, she does not have a huge amount of information about what has happened in other boroughs, but she does know a little bit about some of the support that was been provided over the last year or so. She thought she would touch on just three things. The first is the the Mental Health Act review, which is a really important kind of policy and legislation, development progressing slowly in Parliament at the moment. The second is vaccinations.

Helen was also keen to hear from us whether there are such kind of issues and challenges that we are experiencing around accessing vaccinations that whole area, which is so important at the moment. The final thing Helen wanted to talk about was the Social Care Reform, and where we see informal unpaid carers within that. Its about trying to make sure that unpaid carers are fully recognized, and that legislation builds in better support for unpaid carers, as it goes through Parliament.

Helen wanted to acknowledge how difficult the last 18 months has been, for many of us caring for loved ones who have mental ill health. A lot the lockdown has focused on us being told that we had to stay at home, the cancellation of many of the features of normal life and the activities and the routines that we all enjoy was hard for everybody. She felt how much harder it was for people with mental health conditions for whom often those activities are what helps them get through the week. Helen mentioned if you are caring for somebody with mental health, then that routine is part of the respite that can get you through the week as well. Helen mentioned she knows how difficult that’s been for lots of her constituents who are caring for loved ones with mental health conditions.

This concludes the update for my Joint Southwark & Lambeth Mental Health carers forum.