Monthly Archives: October 2021

Greenwich Mental Health Carers forum August 2021

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

SW London MH Carer Forum July 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 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.

A Gentle Breeze by Shaun Ellis

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.

  1. NHS England to raise the profile of what a carer does and how they can be supported with health care staff.
  2. NHS England signed up and supports and promotes annual Carers Week campaign.
  3. Establish a NHS England board level ‘Carer Champion’ and support NHS England board level members to shadow a carer.
  4. 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.

  1. 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.

  1. 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.

  1. NHS England to support a Carers Champions Network bringing together the healthcare and carers groups.
  2. 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.

  1. 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

  1. 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.

  1. 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.
  2. 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.

  1. 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

  1. NHS England to investigate approaches to measure the skills, confidence and knowledge of carers and potential benefits on care and carers.
  2. 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.

  1. 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.

  1. 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.
  2. Develop a programme of work to support the health and wellbeing of carers through the community nursing strategy.
  3. 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

  1. 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.
  2. 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.
  3. 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.

  1. 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

  1. 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.

  1. 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.

  1. 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).

Priority 5 Primary Care

  1. 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.

  1. 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.

  1. 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.

  1. 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.
  2. Where commissioners identify the need for support, co-produce practical tools and a support programme of implementation with NHS IQ.

Priority 6 Commissioning support

  1. 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.
  2. NHS England to continue to work with the Standing Commission on Carers.
  3. 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.
  4. Establish an annual meeting with key partners including carers organisations to monitor progress and review objectives.

Priority 7 Partnership links

  1. NHS England to continue as a corporate member of Employers for Carers.
  2. 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.

Lewisham Mental Health Carers forum August 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 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


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.


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.


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