Welcome to a brief update for my Greenwich mental health carer forum. One of the carer groups I run with the support of Greenwich carers. As usual the forum focuses on unpaid carers who care for someone with serious mental ill health. The forum runs very 2 months since I mostly focus on my other group for greenwich, which is a carer peer support group.
The greenwich MH carer forum also focuses on engagement with unpaid carers rather than a peer supportive environment. Speakers for the Greenwich MH carer forum were as follow.
Victor Aigbe-Anderson – Social Care Assessor
We also had engagement from Greenwich CCG who have been active engaging in my carer groups.
Update from Victor Aigbe-Anderson
Victor Aigbe-Anderson who is the Social Care Assessor for Queen Elizabeth Hospital could not attend this time, but he did provide an update regarding service transformation and integration with South London CCG and Greenwich Council. Oddly enough for September both members of my Lewisham, Greenwich and even Lambeth attended to hear NHS England speak about Integrated care system changes. However if I have the time, I will update on what NHS England carer lead for London presented for September.
Update from Greenwich CCG
Since Victor could not make it, Greenwich CCG updated carer members on their initiatives. We were joined by iuliana Dinu who is the Communications and Engagement Manager for Greenwich CCG. Her focus was on improving Greenwich CCG communication in order to inform people and let them know about what services are available, plus where and how those services can be accessed. As part of her engagement role Iuliana and working very closely with Deborah Mo.
Just in case you might not already know, Deborah Mo attends my Greenwich MH carers peer support group and also my Greenwich MH carer forum. Deborah Mo is also from Greenwich CCG and is Greenwich CCG’s Mental Health Commissioning Support and Engagement Officer. I know it is rather a long title, but it is a very important one and I suspect many other CCGs have a mental health commissioning engagement officer, which is something carers should be interested in. Just a quick mention is that not only is Deborah a carer, but also has lived experience, which I find important when connecting to those using the services.
Deborah felt that those higher up the pecking order coming to listen is valuable, because as long since she has worked in the NHS, she has not yet come across anyone who does not care about the plight of patients and those that support them. Deborah does acknowledge that this doesn’t mean that when you’re very involved with work, overseeing patient numbers and squaring budgets that it is not possible at times to lose that connection with stakeholders. One of the carer members mentioned that listening is not enough and action or doing something is more important.
Deborah continued on updating what pieces of work are taking place in Greenwich commissioning. These include looking at providers being either both the block providers and the spot providers and seeing how things are developing. Other work and engagement queries look to address how do you move people on regarding their own health needs? and how do you help them to focus on their health and wellbeing. How do you provide the kind of support that encourages them to be independent? And that doesn’t mean that that’s a suitable solution for everyone. Another update was that Oxleas Mental Health Trust is also a lot of analysis at the moment. Deborah wanted to hear if any members of the Greenwich carers forum had been contacted by Independant consultants since she is interested in the outcome.
Concerns and queries over carer co-production.
The idea and focus of co-production came up as a topic during the mental health carer forum. One carer member mentioned that a number of things regarding carers involved in co-production, which seems to be fashionable in certain circles, however it often ends up that carers go to meetings where there’s no great purpose and we don’t get paid. They are not really interested in co-production as much as they are interested in getting services working, but failing that, they are more interested in networking with fellow carers because they are tired of co-production.
Deborah mentioned that she totally understands where the carer is coming from and her mantra is that people should be paid for the oppertuntiy of co-production. She feels people who are experts by experience they should paid. Another carer actually felt being paid is just a side track and they would not want to be paid, but are more interested in action since she feels there are a lot of holes regarding mental health provision.
Deborah responded that even though we are meeting virtually, there may be some issues around expenses and people who become involved can put the money to getting access online or travelling. There is also a sense in which, it is about the dignity of being recognized and you can choose not to be paid.
Lastly there were also updates from Greenwich carers on activities taking place at the building.
This concludes the update for my Greenwich Mental Health carer forum August 2021
Here is the brief update of my South West London carers forum for July. As mentioned, I have not been blogging much due to working on my 2nd book on unpaid mental health carer experiences. I still run my carer groups including helping out West London NHS health trust on their Black Asian minority carer peer group.
However back to South west London.
The following speakers for July were
Phoebe Averill – PHd Student at Kings College Carol Ellis – Carer speaking about her son’s new book Ros Spinks – NHS England Commitment to Carers programme Myself on Why unpaid carers must hold to account
PHOEBE AVERILL PRESENTS ON HER PHD PROJECT
Phoebe from Kings college University spoke about focusing on safety and quality of care in community mental health Services. So as part of the research, she wanted to invite carers to share their views. Phoebe wanted to give us just a little bit more info about the research as the problem of patient safety hasn’t really been a given as much research which is limited, although there is a growing amount of research from those interested in this area. Still, it’s mainly focused on inpatient mental health services. In actual fact, most mental health care experiences are actually in community settings.
So that’s really important that patient safety in community mental health settings are researched as well. So that’s what she is trying to do with the research. Phoebe is speaking with families and carers of adults with mental health problems in the community services. What she is trying to find out is what kind of “safe and unsafe” care means to the carers in this context, because it’s not very well Understood. She would like to know what types of safety issues you worry about as carers and any ideas about what can make community mental health care safer and would could improve the services. There really is no right or wrong answers, it is about hearing carers experiences and opinions.
Phoebe also has spoken to services as well as to healthcare professionals, but it’s really what the carers views are? So what does the actual study involve? It will be a discussion with other carers since that will be what kind of format unpaid carers prefer.
For more information about the project I have included a screenshot below.
There were quite informative questions from carer members of the forum, but I have a lot to catch up with. So will move on to the next presentation.
Carol Ellis and her son talks about his new book
Carol’s son Shaun Ellis started off talking how he ended up with depression due to the death of his father. His book “A Gentle Breeze: Living with depression” focuses on how he managed to survive attempted suicide and his journey battling depression.
Shaun wanted to highlight such experiences through his words and actions. This is why he chose to write a book about his experiences. In this book Shaun describes all the techniques he used to battle his depression. As well as sharing his story, he wants to reach out to fellow suffers and encouraging them to seek the help they need.
Shaun then read a couple of passages from his new book, which led to questions coming from the carer members of the forum.
I have placed a link for those interested in the book below.
Ros Spinks from NHS England & Improvement presents on the Commitment to Carers programme
Ros from NHS England kindly engages with some of my carer groups I run online for half of London. She spoke about her role as one of the regional carer leads, however she covers London, while the rest covers England. Ros spoke about how the ‘commitment to carers programme’ is linked to NHS Englands long term plan, which is actually 2 years old. Ros talked about one of the big areas which are the quality markers in primary care. These are a set of standards that carer’s should expect from any GP practice across the country. However it is not mandatory, which is a bit of a challenge, because it can be difficult to get GP practices to do things in different ways, not because they’re bad practices, but due to such challenges.
Another quality marker is on identifying carer’s because there are still issues regarding the identification of carers in health and social care. It might be that some people do not identify themselves as carers, but that is not the point. It is up to the NHS and social services to help people understand and help educate them on what support they can get as an unpaid carer.
There was a Q & A session from members of the South West London carer forum.
One question was on why are the quality markers not mandatory.
Ros mentioned there has been discussion to make those mandatory, but raised the option that some GP practices work differently and would learn better from other GP practices in a network. Sometimes it is better to try different options ranging from training to rewards if GPs do well in identifying carers. Ros mentioned there is some leverage with the CQC as they use the NHS England quality markers to see if GPs are actually listening to their patients and carers.
Another question focused on what would Ros like to see in place to bring equality to unpaid carers to the level their patients have.
Ros felt she would like to see fantasic carer support centre that actually has the resources to care for the unpaid carer. She would also like to see a carer’s champion just like what they have in the GP practices in the London bourough of Hilligdon. Those in the GP practice could act as the carer champion, which could be the receptionist or GP and surprisingly it does not cost anything, they can help being carer friendly, identify carers and help refer them.
Another question which was very important came from a carer wanting to know what secondary care was doing for carers and if they follow NHS England & Improvement quality markers.
Ros was delighted such a question was asked and she mentioned hospitals were working towards a carer’s card or passport, actually some hospitals already have this and it is a recognition that a patient has someone who cares and that carer does need support and to be kept informed, infact the best secondary support from hospitals is that the carer will be involved in all the care decisions made and not just told what will happen or the carer be seen as an afterthought.
There were many other questions raised from carer members, but below was the one raised by myself on the commitment standards as I was interested in how NHS England’s Commitment for Carers has been progressing since it’s release around 2014. Ros responded to all of them, where some of the responses I have added below since at the time of the document it mentioned a few tasks were ongoing.
NHS England to raise the profile of what a carer does and how they can be supported with health care staff.
NHS England signed up and supports and promotes annual Carers Week campaign.
Establish a NHS England board level ‘Carer Champion’ and support NHS England board level members to shadow a carer.
A senior NHS England Carers Group to take ownership of the ‘Commitment to Carers’ document and NHS England’s support for carers.
Ros mentioned it is Jenifer Kenward who is on the senior management team and she links to the departments health and social care as well.
Collaborate with carers’ organisations to establish how carers award schemes might be extended to commissioners to support improving the experience of carers across England.
Ros responded these would be your Carers UK and Carers Trust organisations.
NHS England in partnership with NHS IQ to hold a national NHS Young Carers event to support how young carers can be better supported and the wellbeing of young carers promoted by the NHS.
Ros responded that usually three times a year, every region has a certain amount of young carer champions that come together to help drive the young carer’s strategy.
NHS England to support a Carers Champions Network bringing together the healthcare and carers groups.
NHS England will continue to implement the Equality Delivery System for the NHS, involving staff, patients, carers and the community to ensure equality is embedded within all of its core business including workforce development.
Ros mentioned NHS England has to do this, its practically a legal duty, she went into more detail about this.
NHS England is committed to supporting innovation in the NHS and will ensure that innovative ways of engaging with and providing care for carers are considered through the national innovation fund schemes.
Priority 1 Raising the Profile of Carers
NHS England to support the relevant bodies, including Health Education England, to support the use of packages for health care staff that increase carers awareness, and support staff to identify, involve and recognise carers as experts, and as individuals with their own needs, choices and aspirations.
On this question, Ros stated that Health Education England do have a training package that actually includes all frontline staff to increase carer’s awareness. Ros still mentioned there still is a problem to make training mandatory and she would very much like to see that.
NHS England to support the relevant bodies in signposting carers to information and advice about support available. The reason I asked Ros this question was because I felt even though resources are out there for carers, it seems not many carers are using them. I am aware there are social perscribers, but they seem geared for older adults to combat loneliness or for patients.
NHS England to contribute to increasing the awareness within the NHS of the duties and functions of local authorities with regards to carers.
Ros spoke how NHS England has made big strides on this task specifically for Integrated Care Systems (more on that in my September carer forum for Lewisham where Ros spoke about ICS Changes). Ros mentioned there has been much improvement and better awareness from a strategic level to the local NHS level.
NHS England and NHS IQ to liaise with carers organisations and the Royal College of General Practitioners (RCGP) in order to support their work on identification, implementation and sharing of best practice models. (Again, I tend to bother the Royal College of GPs because I was interested in an update to the RCGP carer’s strategy when Judith Cameron was the RCGP Carer leads).
Ros responded this would be on the quality markers from NHS England, but there was also recently a series of events from the Royal college of medicine regarding the focus on unpaid carers.
Priority 2 Education, Training and Information
NHS England to investigate approaches to measure the skills, confidence and knowledge of carers and potential benefits on care and carers.
Data sharing: As part of the Patient Online programme, NHS England to scope the potential for carers to access the GP medical records of the patients they care for, where applicable, and the patient has given their consent.
Ros mentioned a huge amount of work has been done on this since 2014, although due to COVID-19 happening she admits work on this has slowed down. Ros states hospitals should have the access to pull patient GP data if a patient turns up to hospitals very unwell and unable to speak for themselves.
NHS England’s new ambitions for End of Life Care, to be published in June 2014, will include the intentions for support for carers and bereaved relatives.
Ros again talked about the personalisation agenda as there has been a lot of work done on this. We spoke about the lead for end of life care who is Sherone phillips, although Ros mentioned there is a regional lead and a national lead for End of Life care.
NHS England to support timely dementia diagnosis and the best available treatment for everyone who needs it, including support for their carers. For example, the revised Dementia Enhanced Service will include an offer of a health check for carers and signposting for information and support.
Develop a programme of work to support the health and wellbeing of carers through the community nursing strategy.
NHS England’s widening digital participation programme to reduce inequalities: ‘100,000 citizens trained in basic online skills to boost health literacy’ will apply to carers as well as patients.
Ros mentioned this is NHS digital and a lot of work has been done on this, but there is more to do.
Priority 3 Service Development
NHS England will promote and work towards parity of esteem for carers so that mental health and wellbeing is considered and supported alongside physical health needs.
Through work on developing the House of Care toolkit, NHS England will work to bring together all the relevant national guidance, published evidence, local case studies and information to support carers to be informed and engaged in care.
NHS England to include carers in work around developing standards and service components for personalised care planning to help ensure carers are integral to the care and support planning process and are consistent with the National Voices principles of care and support planning.
Ros stated this does happen and that it is important to involve the public, patients and carers into the planning of personalised care. A good example is the work done with people with learning disabilities and those that support them regarding annual health checks.
Patients who can benefit will have the option to hold their own personal health budget resulting in direct benefits to carers, including feeling more in control and perceived health improvements.
Ros mentioned this happens through the personalised care.
Priority 4 Person-centred, well-coordinated Care
Scope how NHS England can most effectively support the RCGP and other partners in the work they intend to develop around carers.
I queried if NHS England also work closely with RCGP, RCPSYCH, RCM and others. Where Ros mentioned they do work across different programmes.
NHS England will consider how carers can be supported through commissioning of primary care including through future developments to the GP contract and enhanced services.
Ros mentioned at some point NHS England pulled back from this, but now there are discussions in place.
NHS England to work with NICE and other partners to develop measurement and best practice guidance in order to increase identification of carers.
Ros mentioned this happened last October, so NICE have issued guidence on how carers should be treated and it complementary to NHS England’s quality markers, it should not replace them. (I have posted a link below that might relate to what Ros mentioned).
NHS England to undertake a series of regional evidence summits for carers to establish an independent assessment of the evidence in order to capture, disseminate and encourage good practice.
Ros talked about how the above has happened and has probably morphed into innovated care systems. So this is how NHS England know how Yorkshire, Devon, Surrey have all these brilliant carer strategies, of there are other places as well.
NHS England to maximise opportunities to capture feedback and incorporate into discussions and work to improve quality and inform best practice.
Ros feels this feedback are from monthly calls from carers.
NHS England to undertake a piece of work to understand the impact of current commissioning incentives and system drivers in supporting carers. For example, through the GP contract, revisions to enhanced services for unplanned admissions and dementia.
Ros was not sure, it would be before her time, but it sounds like a one off piece of work, but can follow up on this with us.
NHS England to review current national processes in place to gather bereaved carers’ views on the quality of care in the last three months of life in order to address gaps in evidence.
Where commissioners identify the need for support, co-produce practical tools and a support programme of implementation with NHS IQ.
Priority 6 Commissioning support
NHS England to coordinate effective ways of working by developing partnership links between health, social services and other organisations, including the voluntary sector to establish how carers can be supported as effectively as possible.
NHS England to continue to work with the Standing Commission on Carers.
NHS England to remain a member of the cross government carers strategy board and will encourage and support carers organisations to play an active role in the Collaboration for Coordinated Care.
Establish an annual meeting with key partners including carers organisations to monitor progress and review objectives.
Priority 7 Partnership links
NHS England to continue as a corporate member of Employers for Carers.
NHS England to continue to implement and support established policies on flexible working, leave and emp
There were more discussions raised about NHS England & Improvement commitment to carers, but for more information you can check out NHS England’s Bi Monthly Carers Programme Lunch and Learn Webinar. The link is below.
This was a brief update for my South west London carers forum for July 2021.
It has been a long time coming since I have been so busy on writing my 2nd book which is title “Experiencing mental health caregiving – unpaid carers”. I have decided to take a break on my book and do another blog update. As usual I host many carer support groups and carer empowerment forums. This blog post is an update of my Lewisham carer forum.
The speakers for August were Denis Muganga who is the Service Manager for Lewisham In-Patient MH Services and works at South London and Maudsley. Denis is also deputy head of nursing at the mental health wards in Lewisham.
Denis spoke about Reducing Prone Restraint on Lewisham Acute wards. Many families and those caring for loved ones are often worried about the risk of restraint on mental health wards. Once a patient is in the care of mental health inpatient services then it is out of unpaid carers hands and we have to take a step back.
So it was very important unpaid carers get enagement on quality improvement to reduce prone restraint.
DENIS MUGANGA PRESENTS
Denis explained his role as deputy head of nursing is basically looking at day to day provision of care for their patients. That’s both inpatient and the community as well, but within that, we as a team have quality improvemnt. At our services we do have matrons that work on specific things to individual wards and also services. If there are any concerns being highlighted, and then we as a service look to address it. This would include how patients have been involved in their care and how carers have been involved in care. This covers a lot around physically high quality of care plus anything that is in the patient data system which received, scrutinized and helps find out what could have been done differently.
So the project itself, has been a lot of things over the years in terms of progressing towards a postive outcome. So unfortunately in mental health services there might be occasions where you’re having to restrain patients, because of the patient’s presentation at the time where we might have to mitigate risk awareness.
This project is looking at a specific kind of restraints, which we wish to reduce the risk of harm and at the same time reduce risk to injury to staff and patient. So over the years, there has been attempts made by professionals to reduce the use of restraints, which is needed if trying to administer medication or as a result of maybe aggression from the patient. In most cases, it’s not to mitigate violence and aggression, and maybe to administer medication, depending on how what’s going on.
so the initial projects is about reducing the restraint within the within the service that we have in Lewisham mental health services. At Maudsley we have around 4 to 5 wards. One of the first few things we did was to look at behaviors and areas where prone restraints were being used predominantly and see how we could reduce it. So following the data collection, the initial aims we had in mind is to increase the use of safety.
So at the point of this project been introduced at the mental health trust, there is no other routes used across the trust for rapid tranquilisation for administration of medication. This project was then looking at what options that we could obtain some medication, safely administer medication, when there was need for restraint of a patiant. Part of the project is to take into account the patients dignity because obviously, you don’t want to have to reduce someone’s choice, when there is no need for restaint, if there are other options to do that. So we were looking into that as well and on how it improves patient safety and experience in hospital.
so with those things that we had in mind, we wanted to increase options for the patient in order to reduce restraint and this could be done with choice of equipment. One equipment method is a big cushion or bag that you can sit down and administer medication.
Unfortunately what makes it difficult for this project is the restraint being used at that point is not being taught for giving medication on the arm. So, there has to be a review of the restraint position, so that we can accommodate patient safety. So in that sense, you improve patient experience in hospital. So, we looked at that and also look at what the patient wants. So we did an initial questionnaire to understand what does the patient would like in terms of medical administration
QUESTIONS FROM CARER MEMBERS
One of the carer members was interested regarding the 16 staff members that have been trained in restraint so far. The carer wondered how many persons have been trained, up to date and what’s the plan?
Denis mentioned that within the past two years, so that’s PSTS training, which is facilitated every, which is supposed to be renewed every two years. This is part of this project has been part of training for the past couple of years. But what happens is because everybody don’t get trained together, when you go for training and come back, you go back to what you’re used to. So there is ongoing training for everybody.
So the PSTS training, which has been renewed every two years is basically to put staff together and continue to move things at start the project.
Another carer was interested about the presentation when Denis talked about carers, because that’s what they are involved in. The carer was interested in what support Denis gives carers because he mentioned he involved carers, but the member was curious about that support regarding restraints. This is because the carer might get a bit concerned and worried about maybe hearing people screaming on the wards. The carer was curious to know what support was given to carers and what was the feedback because he heard that Denis got feedback from one carer, but he was sure Denis must have more carers to get such kind of feedback, not just the odd one.
Denis responsed that for this particular project, we didn’t go out to get feedback from carers, it was specific to the patient, However in terms of feedback from carers. We haven’t done feedback specifically for carers around restraints. Although we did have carers working towards the end of the project.
More questions and queries came from a large number of carers at the forum, although an interesting question came from our local carer support officer who was interested if that the point of the project was to reduce the use of prone restraint. Especially if there has there any indication that there’s been a reduction in restraints full stop.
MATTHEW MCKENZIE PRESENTS ON CARER INVOLVEMENT.
I do not always have speakers from the mental health services or commissioners regarding changes to health and social care. Sometimes I try and engage my carer forum members on important topics for carers.
I decided to present on the important of carer involvement.
Were I presented on the following.
What are your ideas of Carer Involvement in services
What does it mean to involve carers
Examples of Carer involvement
Challenges of carer involvement
Why is carer involvement needed?
We discussed as a group what carer involvement in services could mean and then I presented in detail the following.
Does what it says on the tin “identifying and recognising the importance of unpaid carers and involving them in care” It can be a small action or a large one.
As long as carers are acknowledged then they should be involved
My view on Carer involvement is not a hard and fast rule and one of my chapters for my 2nd book is around carer involvement, although I did touch on carer involvement in my first book “A caring Mind”, which is available on Amazon.
THE CHALLENGES OF CARER INVOLEMENT
I also presented on the challenges to involve unpaid carers, being the following.
Lack of resources identifying carers
Complexities of information sharing
Lack of staff training
Lack of carer training regarding mental health.
Lack of time available for the carer
E.g. attending appointments, attending carer groups.
Support information out of date.
I then presented on Examples of Carer Involvement and spoke in depth of the following.
Identifying the main carer
Providing carer with information
Involving carers as soon as it is possible
Supportive approach towards carers
Aspects of care planning and discharge
At the very least listening to carers
….There are more ways to involve carers NOTE: It is Not the same as involving carers in planning services
Carer members of my Lewisham carer forum added more examples to the points I raised so they can talk to other carers they are networked to.
This was a brief update for my Lewisham mental health carer forum for August 2021
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.
Welcome to the July 2021 update of my Lewisham mental health carers forum. The forum focuses on engagement for families and unpaid carers who care for someone suffering mental ill health. The ‘cared for’ does not actually have to be using mental health services, but it is important there is a platform for unpaid carers to learn about mental health support, understanding mental health and what is available for carers themselves.
Speakers for my July carers forum were:
Phoebe Averill – PHd Student at Kings College Polly Pascoe – Lewisham CCG Carla Fourie – SL&M director of social care
Phoebe Averill presents on her latest study.
First to speak was Phoebe Averill who is a PhD student at King’s College. She is working with South London & Maudsley NHS Trust (SL&M) on a research study and she wants to hear carer member’s thoughts and also invite anyone that might be interested in taking part in the research study. She is looking at safety of care in the community mental health services. Phoebe gave my forum a bit of background information about what the problem is. Basically safety in general hasn’t really been given much attention in mental health services. Historically, when you compare it to kind of physical health care services, where we’ve now got quite a good idea about how we can make care safer, what types of interventions and strategies might be needed. Still, there is a small kind of body of research and interventions coming out more recently. These are mainly focused on inpatient mental health services and unfortunately community mental health services have been a little bit left behind, even though that’s where the majority of people who are actually receiving care.
In recent figures, people were using community mental health services rather than inpatient services. So it’s really important that safety is kind of better understood in the community context, so that strategies can be developed to make the services safer. And that’s what she is trying to get started with this research research. Pheobe is currently trying to speak to family members and carers of adults who are using community based mental health services, to find out a bit about what they think about what safe and unsafe care means in this context, because it’s not really well understood. This is due to the types of safety issues that the carer is worried about in relation to the person that they support.
The way the study works involves speaking to her in a either a one to one interview or group discussion with other carers if there was interest from several people in taking part. And there aren’t really any right or wrong answers. It’s really just about hearing carer’s point of view. Carers have so much knowledge about the person that they support and their experiences of care. And it’s just really important that their views are incorporated into any efforts to, to make services safer.
Questions from carer members.
One question was focused on the issues of patient’s age. The carer felt that a 75 year old patient does not have the same issues you’d have with a 25 year old and they were curious to know, what Pheobe would be doing for older adults when it comes to community work? Especially for the carer because there’s a lot of issues with older carries with physical issues. How will the research be monitoring those patients or those carers?
Pheobe responded that unfortunately for this study, we’re only looking at sort of general adult services. So we’re Other than older adult services, like you mentioned, it’s not because it’s any less important. It’s just that at the moment, there’s the most kind of research knowledge in adult in adult safety. so future studies would be needed to look at older adults, because there’s like you mentioned, there’s lots of really important safety problems there.
Statement from myself
After some debate I mentioned that one thing in regards to research is that whatever is found out could lead to recommendations, usually, most research initiatives tend to recommend some findings that will have this influence services. A lot of people feel research is done for either funding on does not solve service issues, but I pointed out researchers are not in charge of mental health services.
Polly Pascoe – Lewisham CCG Presents
Polly spoke about her work within Lewisham Borough Council and southeast London CCG. Her role is it was called integrated Commissioner for mental health pathways. In essence, one of her key roles is getting us to use future systems across mental health care, while it’s occurring across healthcare in general, her focus is on mental health especially within Lewisham. This is kind of where we’re hoping to head moving forwards. The previous system, that being health and social care worked separately regarding statutory and voluntary. Such as Provider sectors were working separately and sometimes even competitively where age groups were handled separately, and such services provided different levels of focus and funding. Conditions were often handled separately, and there was a strong focus on outputs as in numbers, rather than changes necessarily. So there used to be a strong focus on reaching particular targets, on how many people were seen and how many people were funded by CCG.
Now Lewisham CCG have made some definite headway in Lewisham to becoming much more integrated in the way we do things. Of course it’s a journey. So we’re certainly not there yet. Still, Polly was sure a lot of people will have experienced a number of different frustrations around how the system’s working. She feels we are becoming a more integrated health and social care system. Where we are working much more closely with our sector providers. It’s not just the big players e.g. (SL&M), Lewisham CCG is also connecting into our community organizations and age groups do remain relatively distinct. Often the way we do things will mirror that which isn’t always appropriate until the impacts of concurrent issues are understood. So we do have a clearer idea of how different conditions work with each other, but they are still seen often as separate conditions.
At Lewisham CCG they are certainly moving towards a focus on improving outcomes, but they do still have quite a heavy target focus. Those targets are becoming more appropriate as Lewisham CCG move forward. What they are heading towards is a future system where health and social care workers one, and Lewisham CCG are focused on the individual rather than on our kind of organizational boundaries, let’s say, Lewisham CCG want to move between statutory and voluntary services. So between the NHS Trust’s and then any services working in community to be visible, Lewisham CCG don’t necessarily want people to feel they’re being handed off to different places all the time. And they want people to have their personalised journey where movements between that journey feels very seamless. They also want to move to an all age approach where the CCG see the individual as experiencing certain things throughout their lifetime.
So this is also moving beyond comorbidity, not just recognizing people’s potential health issues, but understanding wellness, and looking at their life, and how the CCG can ensure that the way of living and that the way people around them, treat them and work with them ensures optimum wellness, rather than just the absence of ill health, which is one of Polly’s key findings on commissioning and delivery. So this is the way that the CCG design and make services happen. Lewisham CCG deliver those services to people where it is outcomes based and focused. So we want to move away from numbers of people, and move towards the difference we make to people. So that’s the kind of very much that future system Lewisham CCG is working towards. Polly admits she has one very small part to play in a really huge system. And, in essence, this is kind of where she sits in and amongst everything else. Her area is primarily adults and older adults. So she continues to do look at these two areas, predominantly for herself and her team.
Carla Fourie – SL&M director of social care presents
Carla started off talking a bit about herself and when she was appointed in February this 2021, although some people will say that they sure they saw her prior prior to this year and that’s true. She started on secondment with the trust last year literally just a few weeks before the initial lockdown. Eventually the role was made permanent, and she applied for it. She was then formally appointed in a full time role in February this year. Carla looked at putting the slides together and thinking about how she could describe what her role is at the trust, she decided, looking at kind of the role to group it into four key categories. As the most senior social worker in the trust, she works closely with NHS trust board and she works closely with SL&M senior managers, to bring a social work perspective, to the NHS trust. So when we look at our multi professionals within the trust, we’ve got our doctors or nurses and OTS, etc.
In the end Carla’s role is to bring the social worker perspective at a the senior level, she has also the responsibility to work across the trust with the different local authorities, and to ensure that SL&M avoids working in silos, so there is partnership working, and to ensure that the Social Work offer is provided to people with mental health needs, and to help people become in terms of prevention. Her other role is also that trust wide responsibility for safeguarding so the heads of adult and children’s safeguarding reports to her including the areas for domestic violence and abuse, prevention agenda. She also has a trust wide responsibility for the mental health laws that include areas such as mental health capacity, Human Rights Act, etc. In terms of just tying back to the social work, leadership role, apart from working closely with a board, she also has the responsibility to ensure that our social work workforce, social workers that’s directly employed by the trust, are also professionally well supported.
Carla spoke in terms of support to carers and families, where she thought, were important just to highlight again, on a slide where the work at that the trust is doing overall, in terms of manpower strategy, and that’s very much also founded on the triangle of care, where SL&M sees the carer very much as a partner in the care that SL&M provide. There’s a lot of information that SL&M has developed as a trust and under the leadership of Gabriel Richards, who leads strategically on the carer’s agenda. SL&M has got a carer’s charter that is highlighted. SL&M also provides information in their families and carers Handbook, and also information leaflets, posters shown in the blog regarding carers rights under the care rights, writing, carers assessment. SL&M also has information about confidentiality and sharing of information.
SL&M also provide information to nearest relative where we have useful nearest relative leaflets as well on what is provided to carers. One of SL&Ms duties is to try To ensure that ‘cared for’s relatives are informed and consulted with, particularly when there was a Mental Health Act assessment under Section two of the mental health act. The approved mental health professional has a duty to inform the nearest relative under Section three, where the relative has the power to object to someone being detained to a loved one being detained under the Mental Health Act. The nearest relative can also ask for an IMHA, which is an independent mental health advocate to see the patient and the nearest relative can request a mental health assessment, which she thinks sometimes nearest relatives not everyone is aware of that in certain circumstances where it’s been really difficult or challenging to access for whatever reason. So whilst the local authority is to consider the assessment under the Mental Health Act, or the rights and powers of a nearest relative. The nearest relative can write to the associate hospital managers to request for discharge. Sometimes that’s out here too, but in circumstances where they’re responsible clinician disagrees from a clinical point of view, they can roll that request up to the hospital managers who will review that decision as well.
An nearest relative can also appeal to mental health health tribunal, and they’ll set up some circumstances where nearest relative feel that they are not able to take on this role, because it does have a lot of power and responsibility with it. And sometimes some families feel that if someone that’s been identified as a narrows relative that may impact on relationships with their loved one.
This concludes our Lewisham MH carers update for July 2021
Welcome to a brief update of my BAME carers forum for June. The BAME carers forum is an online forum aimed at those who care for someone suffering mental illness, except the forum covers ethnic experiences regarding caring along with discussions on how serious mental illness affects minorities and diverse communities.
For June 2021 the speakers were
Faith Smith (carer) on her Section 136 project
Keisha York from BAME in Psychiatry & Psychology
Sharon Jennings of Goldsmiths University
Emma James Senior Policy Advisor at Barnardo’s
Faith Smith Presents on her Section 136 project
Faith started off explaining how she became a carer, which led to her being a carer advocate due to being involved at South London and Maudsley NHS foundation trust, which led to her joining their involvement register. She was introduced to the involvement register a care coordinator, which she does interview panels, sit on focus groups, training with staff and joining trust values day, which is a staff induction day.
Faith Smith has now been asked to chair and set up a group that is going to be PAN London group. Its aim is to explore section 136 of the Mental Health Act. Section 136 Mental is where the police have the power to remove a person from a public place, if they appear to be suffering from a mental disorder disorder and move them to a place of safety.
The place of safety could be a hospital, although often the outcomes have not been as they should be, and in past experiences there have been tragic events involving the police and those in mental distress. So the idea is that this group that she is going to be setting up, is going to be a solution focus group. The group is going to be made up of experts by experience to be either carers or service users. Where the aim is going to be to map the journey of Section 136. So if an individual has that map, then the journey will be looking at what improvements could be made. So here we can see what outcomes could have been different along the way at each stage, from being someone first becoming unwell to the police being called to then take the person to a place of safety, the hospital or the police station or wherever? And then the outcome how could that experience have been made better? So it’s to identify improvement. Faith wanted to see if members could be involved or at least spread the word.
A question from a carer member queried if 136 was going to be split into two sections where one is for other people or older adults?
Sharon Jennings from Goldsmith university Sociology course presents
Sharon was excited to hear how carers can set up research groups. This was in regards to Faith’s presentation. Sharon mentioned that at Goldsmiths university also have an experts by experience group. This group is for the Social Work courses, and they do a lot of teaching. The experts are involved in the admissions of students, looking at policies and much more. Sharon was happy to ask if forum members were interested of being part of that group or at least being involved with the group, it’s really about developing terms of new social workers, as in social work students on the awareness of service user/carer issues and understanding how to speak to people that use services.
One of the things Sharon wanted to talk about was on the inequalities of social care and racial inequality in social work, but mainly from the position of practitioners. Sharon wanted to point out the kinds of challenges for black Social Work practitioners. She was not sure if most people at my BAME carers forum would have had some kind of contact with a social workers, either in one way or another good, bad or indifferent. Sharon wanted to start with the importance of social work from the students perspective and the experience of black students or black and ethnic minority students.
Sharon mentioned some research done between 2009 and 2012, which was published in 2014. It was asking black and ethnic minority students about almost about their experiences on social work programs in the UK. People felt like they were in an uninhabitable terrain, being on a course of social work or degree course. It was hard to be themselves. It was hard to breathe, it was hard to relax. It was hard to feel that they belong there. They felt that they were climbing and climbing, but not being appreciated, not being valued.
Sharon felt the students found it really difficult to open up about how they felt. We expect our social experience from day one to start talking about their lives, the backgrounds, family, their relationships, their everything in order to talk about there experiences. People don’t feel comfortable on day one doing that, trust has to build up. So people felt that they weren’t equipped for this, because when they did share their own particular cultural learnings or teachings or their background, it wasn’t understood, it wasn’t valued and sometimes it was criticized.
Sharon feels it’s about what people’s life circumstances are like. So for instance, many black social work students have to continue to work. They can’t wait to take time off. There aren’t any bursaries until the second and third year, so the very first year they don’t have money even if they may have caring responsibilities, family responsibilities. So to conclude social work students have a difficult time especially those from black backgrounds.
Emma James from Barnardo’s presents on BAME young carers
Emma from Barnardo’s started her discussion on questioning on the importance the lives of all children and young people who should be free from poverty, abuse and discrimination. Emma mentioned that young carers are part of the millions of unpaid carers in the UK providing care and support for a relative. Some young carers take on their caregiving responsibilities as young as four years old. Others do over 30 hours of caring a week and on top of attending school or college. Emma stated that firsthand the impact caring has on their mental health and well-being is staggering with many suffering from depression, isolation and anxiety. So the children Barnaro’s work with and many others across the country are sacrificing their childhoods and their futures. All this by having no choice but to drop out of school or actively choosing not to go to university or college due to their caring responsibilities.
Emma also pointed out that the BBC did a survey a couple of years ago, which estimated that there are probably over 800,000 young carers in the UK today. So Barnardo’s runs 20 services across the UK that support young young people care for relatives who have a disability or illness mental health condition or drug or alcohol problem. Last year, Barnardo’s worked with 330 500 young carers and their families. Barnardo’s also support many other children and young people in their services who also have caring responsibilities. So in Barnardo’s mental health services they run domestic abuse support services, which will often uncover if these children also Young carers.
Around five years ago Emma did an indepth research with the young carers they support and found that the impact the caring was having on their lives was really significant. The young carers Barnardo’s supports often spent over 20 hours a week caring for their relatives, most commonly their mothers, they often care for siblings as well as parents. These sorts of things Emma found they were doing was cooking, cleaning, administering medication, washing, shopping, helping the cost of siblings providing mental health support.
Banardos campaigned in 2014 around Children and Families Act in the Care Act, which gave local authorities a duty to assess young carers. So this led to more referrals for young carers, but often there isn’t the support once young carers are assessed. There’s often waiting lists for support and in terms of outcomes for young carers, they’re more likely to be not in education, employment or training (NEET), they’re more likely to be bullied at schools and more likely to have poor mental health, loneliness and isolation. Young carers end up with lower grades in school, and they’re more likely to come from BAME communities. Whilst Emma was doing her research across all of their young carers services, it was really clear something that stood out for her, this was that young carers from minority communities had additional pressures and stresses that statutory services were not aware of and they weren’t being supported.
The most important thing that Barnardos do is they help the family get more support from social services so that young carers don’t have to do so much supportive work. Barnardos talk to young carers school so teachers understand their situation and can be supportive. Plus Barnardo’s give young carers advice and emotional support through counseling sessions.
Here is a link to one of Barnardo’s reports on BAME young carers.
Keisha York from BAME in Psychiatry & Psychology presents
Keisha York the founder and director of BAME in Psychiatry & Psychology network (BiPPN) wanted to say is it’s been a pleasure, to be invited to my forum again. She was interested just to hear a lot about how BAME carers and the sort of difficulties carers are experiencing. Keisha was just going to focus on providing updates about what the BIPP network is doing and what they would loved to do. Keisha felt that in hindsight and listening to the group, she would have wanted to give some more data and statistics on some of the issues raised on the colonization of the curriculum or representation, but Keisha felt that might be perhaps a part two or part three, because this is the second time they have been invited to my BAME carers forum.
The BiPPN are a registered social enterprise and low profit organization since September 2019, and they are led by mental health professionals and students in medicine in psychology, who aim to prioritize, lots of representation of black psychology. The BiPPN also provide such a community for individuals from racialized backgrounds, both registered and prospective mentor professionals to acquire social, emotional, psychological and developmental support. Whilst the BiPPN do focus on psychiatry and psychology, they do recognize that actually, this has been a really good source of support space and community for anyone who is a mental health professional. So the BiPPN encourage anyone really to join our network and be a part of it and attend the events that they do. So how do the BiPPN achieve this aim of prioritizing and advancing the representation of racialized groups in those professions?
The BIPPN provide insight, guidance and knowledge on access in psychiatry and psychology. The BiPPN focus on this primarily because they are aware of the issues. Keisha feels as someone mentioned earlier, these issues have been discussed for years around what are the barriers to individuals accessing these careers (Sharon’s presentation on the problems BAME students face studying sociology).
The BiPPN want to learn and focus on how they can equip these aspiring psychologists with the skills to actually navigate through those barriers, and actually be more equipped to address some of them as they progress in their careers. The BiPPN also increase the exposure to learning and discussion of cross cultural and race related psychological theory practices and research.
Keisha is aware about colonized curriculum that only addresses the mental health of white Eurocentric individuals. So what the BiPPN aims to do is increase the exposure of models, approaches and theories which relate more to how black and racialized groups experience the world as reality, plus how they suffer from mental health issues. Lastly, the BiPPN explores the various approaches to addressing black and ethnic monetize groups in mental health and racial disparities and mental health care. So the BiPPN events are attended and are hosted by a range of speakers, both psychiatrists and psychologists. The BiPPN increase exposure to that knowledge to either aspiring or current practitioners. So they know how to address this within the NHS and in their various workforces.
For more information about the BiPPN please see link below.
Hello fellow unpaid carers. This blog site is geared towards those who support or look after someone suffering mental ill health. I run a number of carer-led expert by experience forums, which focus on unpaid carers regarding engagement from services. Most forums tend to have speakers to engage members regarding mental health system changes or discussing carer awareness.
For the South West London carers forum the following speakers were
NHS South West London CCG – Understanding health Commissioning for carers Dolly Sen – Mental Health Patient/Carer champion Matthew Mckenzie (myself) – The importance of carer peer support
As you might be aware, clinical commissioning groups are merging in their own region as part of NHS England’s long term plan, because my group covers a large area, it made sense for the comissioners to speak to carers from different boroughs in South West London.
South West London CCG presentation
First to speak was Caroline O’Neill who is the Lead Engagement Manager and covers Kingston & Richmond from NHS South West London CCG, we also had John Atherton in attendance who is the Director of Mental Health Transformation for SW London CCG.
John started off the conversation on what the plans are for the rest of the year and going forward. John explained how the 6 CCGs formed in five commissioning groups in South west London. They are responsible for planning, commissioning and buying most of the NHS services in the south west london area. That means hospital care, GP surgeries, rehabilitation clinics, mental health support, learning disabilities and many others.
The CCGs have a healthcare budgets of over £2.3 billion, although carers who attended the June’s meeting were interested in the CCGs mental health pathways and how they were going to include families and carers.
John explained the importance of health checks as those with mental ill health often struggle to get physical health checks and support. John mentioned what happened in the past is people were encouraged by their GP go get a physical health check each year. It is important the CCGs continue to push this forward because there are some service users who had not had a good experience in the past, or they don’t believe in health issues, so they are encouraging people to check at their practice.
A carer reminded the CCG representatives about how difficult it is for people have mental health difficulties to travel especially using public transport. They wondered how this will affect people accessing mental and physical health services for check ups.
I also asked a question to the CCGs regarding is there a simple view of the commissioning structure? Because we have got CCGs doing stuff in 6 boroughs, and then you’ve got merged CCG? So how do people sort of feed into each other on what is going on? The representatives spoke about their governing body and who is on it.
Another carer was concerned about those with learning difficulties with poor health accessing recovery colleges and wondered what the South West London commissioners were going to do about it.
The representatives were pleased to hear SW London and St Georges were promoting the carers forum, but the CCGs also wanted to include our group on developments of mental health services, as the group stressed the carers should be consulted and involved when it comes to service provision. All too often CCGs struggle to get a good number of carers interested in what they do. It could be an added benefit that carers poke their noses into what is being comissioned and why. This is because carers have a vested interest in the health of who they care for, plus carers do actually use some CCG services which could be Increasing Access to Psychological Therapies. A carer member of the group was concerned about the number of carers not being identified and referred to carer services and groups.
An interesting point of the discussion was finding out who were the mental health leads from each of the 6 boroughs, although there is a lot of work needed in developing primary care networks, because some members feel some GP surgeries could learn a lot from other GP practicies.
Dolly Sen presents
It was requested by carer members for Dolly Sen to talk with us at the forum. Dolly Sen is a service user survivor and a carer and has been fighting 20 years for human rights. Dolly mentioned that over the years while trying to keep mentally well, she has been using energies to focus on art, film, performance and even talking about her experiences at other events.
A large part of Dolly’s activism is around the treatment of mental health users, especially around the problems with benefit payments or DWP. She is quite busy working to improve the mental health system in another area where she has moved to. Dolly admitts there are times when nothing can be done on someone’s health and situation, she feels sometimes it is best to be a witness.
A number of questions from members at the forum were interested in how their mental health trust is working to involve more carers in their involvement register. They queried with Dolly about involvement and activism.
Hello fellow carers. I have exciting research news for you.
Phoebe Averill who is a PhD Student of the Health Service and Population Research Department from Institute of Psychiatry, Psychology and Neuroscience. Is working on a research study about the safety of community-based mental health services. This is a nationwide research aimed at unpaid carers.
Please see below for details.
What is this study?
We are carrying out a study to find out about safety problems in community-based mental health services for adults. This research will help to increase awareness of the types of safety problems service users and carers experience in these services, as well as gathering ideas about how community mental healthcare could be made safer.
Taking part would involve participating in your choice of either a one-to-one interview, or a group discussion. Interviews or group discussions will be conducted remotely via a secure online platform (e.g. Zoom), and will last for up to one hour.
Who can take part?
We would like to speak to family members/ carers of adults who are using community-based mental health services. These include primary care (e.g. treatment and monitoring of a mental health condition by a GP), or secondary care mental health services (e.g. outpatient support from Crisis Resolution and Home Treatment team, or a Community Mental Health Team).
To take part, you must also be:
Over 18 years old.
Able to understand English sufficiently to take part in an interview or group discussion.
Able to provide informed consent.
Not currently using inpatient mental health services.
Who should I speak to if I am interested in taking part?
If you are interested in taking part, or would like more information, please contact Phoebe Averill at firstname.lastname@example.org.
Carers will be offered a £15 shopping voucher in return for taking part.
Welcome to June 2021 Joint Southwark & Lambeth mental health carer forum update. Below is a list of speakers for the carer forum.
Faith Smith – Unpaid carer on her 136 project
David Meyrick – Southwark inpatient carer lead updates on carer support.
Alice glover – SL&M Patient & carers involvement
Emily Holzhausen – Director of Policy and Public Affairs for Carers UK
Elinor Bradley – on gathering carer experiences for Royal College of Psychiatrist
Just a quick note that the Southwark & Lambeth carer’s forum runs once a month and seeks to help empower families and carers who are caring for someone suffering mental ill health. The idea is for families and carers to know what is going on and also to hold to account, while getting educated about unpaid carers, health and social care.
Faith Smith presentS ON 136 PROJECT
Faith who is one of the carers involved at SL&M (South London & Maudsley) involvement register, basically involvement scheme for patients and carers. Faith is also a member of several of my carer groups. Faith mentioned she is a carer advocate and is working on a new project that she would like to introduce to us this afternoon. The project is around the section 136 of the Mental Health Act. Section 136 of the Mental Health Act is actually a section that gives the police the power to remove a person from a public place when they appear to be suffering from a mental disorder to a place of safety.
The place of safety could be to a hospital or to police station. We all know that those those kinds of interactions do not always go well and the outcomes are not always what we would like. So she has been asked to set up and share what is going to be called a Pan London, section 136 carers board. The aim of the group is to establish a solution which a focus group of experts by experience, which would be a group of carers and service users experts by experience.
The idea is that the group focuses on coproduction, a safe environment, holistic approach, which would then in turn lead to better outcomes.
David Meyrick SL&M Southwark Inpatient carers lead.
Next to speak was David Meyrick who works hard to promote carer inclusion on inpatient wards. David wanted to speak about the carer champion roles and how that works on SL&M inpatient settings.
So across the trust, every team should have carer champion either either one or two, on the wards, and so that we have two champions for each team. The idea is that the kind of champion will lead on the work that team does for me and carers, but not in a way that they get left with all the work for carer support within that team.
What we want to do is encourage staff to create an environment where the whole team has carers on a focus for evidence business the same way that we approach safeguarding, for instance, safeguarding is ever in business.
What you want to do as carer champion is to be more trained, be more aware and have more case knowledge and skills around carers, but use that to support their colleagues so that we get a consistent level of support for carers. So currently we have two carer champions, each team has currently, in the inpatient setting, that can be a little bit of a challenge, because it’s a high turnover staff. David has been busy with carer welcome packs to give to families and carers on the wards and continuing with his carer support groups.
Alice Glover SL&M public and patient involvement
Alice wanted to talk a little bit about involvement. She wanted to be a little flexible on the issue of involvement because she not sure what members wanted to know regarding involvement and co-production. Alice was happy for anyone to put in questions in the Zoom chat or even interrupt her presentation. Alice gave a quick overview of the involvement side of things. Alice covers Lambeth and Southwark, but for Croydon and Lewisham that is covered by Jane Lyons and other boroughs and directorates. Alice feels the whole thing about involvement is about how we’re improving and developing our mental health services, and how we’re improving people’s experience by people who use our services and people who care for them. The important thing is that as a mental health trust, we are listening to people’s experiences and those experiences are influencing changes within those services.
So there’s lots of ways that people are involved in terms of sharing their experiences from filling in satisfaction questionnaires, with specific questionnaires for carers. She knows David has done some really good work to encourage carers to fill in satisfaction questionnaires on the wards so that we can start to understand how carers are experiencing our services. Where it is not just about how their loved ones are experiencing things, but actually how carers also experience services.
As a mental health trust we look at complaints, and look at incidents and even compliments. So there are many ways of how we try and understand how carers are experiencing SL&M services, but also on behalf of their loved ones. Alice continued to explain other forms of involvement including the involvement register, which is basically a list of people who have been through a process and it is for people with lived experience of using our services, or as a family member or carer.
She is aware that there is at least 5 people at the forum who are on SL&M’s involvement, which they may want to say something about their experiences of being on the involvement register. Alice just wanted to say, they are always encouraging more carers to join our involved register, at the same time recognizing the limitations that people have on their time and totally understand that people don’t always have the availability just because of the other things going on in their life. Not least of which may be caring for their loved one.
The involvement register can be a flexible way of getting involved and being paid for your time. It means that you can you have opportunities to get involved in projects, sharing experiences as a carer in a way to try and influence change in terms of how services are developed.
Emily Holzhausen from Carers UK presents
Emily from Carers UK was delighted to be at such a carer-led forum and wanted to mention how she met Matthew quite a few years ago and I was so impressed with how he spoke about carer involvement at mental health trusts. She also wanted to mention how impressed she is with Matthew as he advocates for carers in regards to national work, because he really draws on the experience of working with unpaid carers and their stories. Emily enjoyed the discussions regarding mental health services and how unpaid carers experience involvement.
Emily has been around for many years campaigning on the unpaid carers movement, but she does wonder whether with some of the engagement and involvement is very well aware around the benefits issues with those payments. Emily wondered if it’s possible to be flexible around some of the expenses, for instance maybe paying for WiFi or data or something like that to help carers engage in a different way. If they can’t take the payment because of benefits.
Emily continued to speak about Carers Week 2021 and talked about why they campaign for Carers Week? They do it because caring is so often invisible, because it can quite often a private matter. The problem can also be a double edged sword because while its private, it can also mean carers can suffer in silence and isolation. So this year, it allows us to talk to anybody we want to really about caring, whether that’s the general public, families of friends, whether it’s employers, services and so on. So this year 2021, Carer’s UK chose the theme “visible and valued”, because last year, we said making caring visible, and carers told us we want a bit more than that. So such a theme added in.
Carer’s UK used their words and added invisible and valued this year. It has been really interesting as We’ve had a lot of engagement. Carer’s UK has done more events with employers than ever. Such events with employers and many more, but another thing is Carer’s UK had last year was tough for people because many are still getting to grips with the pandemic. So this year, there has been an increase in online activities with less being face to face.
Emily spoke about numerous wellbeing activities, which have been focused on carers, these were in terms of the politicians, where they had 66 MPs pledge support for carers week. Plus a number of MPs came to hear carer stories at one of Carers UK focus event.
Elinor Bradley on Royal College of psychiatrist project
Elinor attended the carers forum to speak on her latest project, she also works for Kent & Medway NHS trust, but she is representing the faculty of rehabilitation for the Royal College of psychiatrist. Elinor wanted to speak about a national issue, where she suppose it was similar to what Emily was talking about bringing the voice of carers forward. As of this moment the Royal college is sort of trying to represent the voices of carers and service users of rehabilitation services. She was sure many of those attending would know about mental health rehabilitation, but it’s really the branch of mental health services for people with complex mental health difficulties quite often psychosis. For those patients with psychosis, they have got some residual impairments, that really limit their ability to function independently. So quite often they unfortunately have had lots of repeated admissions, lots of crisis admissions, or lengthy admissions.
The royal college of psychiatrists have campaigned quite hard for the voices of people who have got complex mental health difficulties. This has sort of resulted in a new NICE guidelines, which are very sort of focused on reducing out of area care, and being focused on Person Centered Care, and also the involvement of carers and family as part of the support system.
So the RCPSYCH has done some really good work in the college, but what they are aware that they don’t really have the voices of carers or those other service users with lived experience represented on the website. So they currently engaged in a project and to collate some narratives or some stories of service users, for carers with lived experience of complex mental health.
The aim is to give those a platform nationally, so that would be on the Royal College of psychiatry website. Plus also to use experiences to work towards future campaigns and guidelines that we should be working towards. This is so that the royal college is looking for the good and the bad of supporting someone with complex mental health difficulties. This can also extend to the good and the bad of rehab services or even 136 assessments and inpatient wards as she mentioned on what David was talking about earlier on.
The aim is to raise the voices of the whole journey of supporting someone with complex mental health difficulties, so the college is looking for accounts, narratives of a range of people nationally.
This concludes June’s joint Southwark & Lambeth Mental Health carers forum.
Please check out our next set of carer group dates.