Category Archives: SW London Carers Group

SW London MH Carer Forum August 2021

Welcome back to a brief update of my South West London mental health carers forum. It is not like my other forums since this one tends to be a hybrid of peer support and carer engagement. Plus its probably my largest carer forum which cover’s 5 boroughs or six boroughs if we engage with NHS South West London CCG, because the commissioners cover six boroughs that being the borough of Croydon.

Anyway, one of the main focus is on how South West London & St George engages with unpaid carers, especially about mental health services, but the forum can then become a networking forum for other carers even outside SW London as sometimes national speakers may appear.

The speakers for August were

Elizabeth Stirling the new CQC inspector for SWLSTG

Tristan Brice from London Association of Directors of Adult Social Services.

Elizabeth presents on what the CQC is about

Since the CQC spoke at length regarding roles and plans, I can’t blog too much about that, however Elizabeth was kindly referred to engage with our group since their interested in how the group is supported.

Elizabeth spoke on the following.

  • How she has Worked in health and social care for 23 years
  • Worked as a support worker for four years
  • How she has been a Social worker since 2005
  • Worked for Mental Welfare Commission for Scotland
  • Has lived experience on caring regarding mental health.

Elizabeth then moved onto what the CQC does as in that the Care Quality Commission monitor, inspect and regulate services to make sure they meet fundamental standards of quality and safety, and they publish what they find, including performance ratings to help people choose care.

The CQC also set out what good and outstanding care looks like, and they make sure services meet fundamental standards below which care must never fail. Obviously, the CQC use information and evidence throughout their work, including people’s views and experiences of care. The CQC work closely with the public, other organisations and local groups across everything they do, that includes patients and carers of course.

Next Elizabeth explained the core fundemental standards for the CQC and what they look for. These would be

Person-centred care
Dignity and respect
Consent
Safety
Safeguarding from abuse
Food and drink
Premises and equipment

To also mention although the above is important, the CQC do look for other things as well. With the list above, they apply to fundemental standards that apply to mental health trusts

There was a very long Q&A session regarding these standards that apply to the rating of SWLSTG, but the important distinction was that it was coming from a carer’s perspective.

Each of those standards mentioned must follow a criteria of questions usually 5 of them, which are

Safe: you as the patient protected from abuse and avoidable harm.
Effective: your care, treatment and support achieves good outcomes, helps you to maintain quality of life and is based on the best available evidence.
Caring: staff involve and treat you with compassion, kindness, dignity and respect.
Responsive: services are organised so that they meet your needs.
Well-led: the leadership, management and governance of the organisation make sure it’s providing high-quality care that’s based around your individual needs, that it encourages learning and innovation, and that it promotes an open and fair culture.

Of course there has been a massive impact regarding how the CQC works and I had asked Elizabeth to talk in depth on covid-19.

Elizabeth talked about how the CQC had to adapt on how they work. This was a mix of on-site and off-site methods. In March 2020, the CQC suspended their routine inspection programme in response to COVID-19 and developed their ability to monitor services using a mix of on-site and off-site methods. Other changes were on improving the CQC’s ability to monitor risk to help them be more targeted in their regulatory activity. With that, by bringing information together in one place for inspection teams, presented in a way that supports inspectors with their decision making and by testing elements of how they want to work in the future, including how they provide a more up-to-date view of risk for people who use services.

I myself have always stressed to carer’s that the CQC is not a one way system, unpaid carer’s must provide the CQC with information and also requests so carers are working in partnership with the CQC. Elizabeth expanded on this by stating Information from patients and carers is very important to the CQC. All the information the CQC receive will be added to the records they have for each care service. The CQC can use this information to help decide where to inspect next, and what to look at when they do. When the CQC receive information about a concern for someone’s safety, they will treat it as urgent.

The CQC also use what people tell them to understand the quality of care they get from services like care homes, care agencies, hospitals and GPs. It helps make care better for everybody.

Again there was a very long question and answer session from members of the forum, but for those reading this blog please see the below.

CQC Feedback site : https://www.cqc.org.uk/give-feedback-on-care?referer=promoblock

You can also call the National Customer Service Centre (NCSC) on 03000 616161 or email enquiries@cqc.org.uk.

  • Tristan Brice presents

To be honest the conversation stretched so long with the CQC, that Tristan had to come back another day, which I will blog at a later date.

This is the brief august update of my SW London mental health carer forum.

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 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.

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).

https://www.nice.org.uk/guidance/ng150

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.

SW London MH Carer Forum June 2021

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 boroughs they cover are

Croydon
Kingston
Merton
Richmond
Sutton
Wandsworth

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.

Dolly Sen

You can find more of Dolly’s work below.

https://www.youtube.com/user/dozzyangel/videos

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.

SW London MH Carer Forum May 2021

Welcome to the update for May’s South West London carers forum. As with all my carer groups and forums, this is aimed at unpaid mental health carers. That being families who are caring for someone with a mental illness or mental health needs.

We were visted by Diane White who is the CEO kingston carers. This was one of the carer centre leads to engage with carers the past 3 months as Richmond, Sutton and others have been talking to carer members about each borough’s carer strategies. Not all London borough’s have carer strategies, but when they do have strategies or a focus on carers, then it means carers get a chance to see if it has made a difference in their lives. A carer strategy is also a good way to hold boroughs on their promise and committment to unpaid carers.

Diane White did not speak much regarding carer strategies since the borough of Kingston is developing their carer’s strategy as of present. Diane spoke about the support Kingston carer’s centre provides for unpaid carers. She also mentioned the challenges they have considering covid-19 and budget restrictions.

The second half of the forum was focused on important questions a carer would need to ask if the person they were looking after starts using mental health services. Most of these questions should be asked at ward rounds, care planning approaches, tribunals or carer assessments. The idea I talked to the group about such questions if for empowerment purposes, besdies such questions are provided by the Royal College Of Psychiatrists.

Patients, service users or mental health survivors should try examining such questions in preparation to ask them.

About the illness

  • What is the diagnosis or problem?
  • If a diagnosis has not yet been made, what are the possibilities?
  • Why has this happened to them?
  • Will they recover?

Why ask these questions as a carer?

When I started out as a carer, I did not understand what I was caring for. All mental health conditions affect the person differently, as someone with an eating disorder will behave differently from a person who self harms. It is very important to understand and educate what conditions you are caring for.

  1. If a diagnosis has been made
  • What symptoms suggest this diagnosis/illness?
  • What is known about the causes of this disorder/illness?
  • What is likely to happen in the future? Will it get better or worse?
  • Where can I get written information about this disorder?
  1. Why ask these questions as a carer?

Now that you might know the diagnosis, there is a chance it can help with further questions. The questions above are very good and you might not be able to ask such questions in one sitting, thats impossible, but you later on down the line you will have a chance to ask them. Out of all the questions on this blog, these ones should be the most accessible since there should be leaflets and booklets on the ward about mental health conditions. It does help if the doctor or psychiatrist explains things in more detail, especially the severity of the condition.

2 About the assessment

  • What assessments have already been done?
  • Are there any other assessments that might be needed?
  • Are there any physical problems that have been discovered? If so, what will need to be done?
  • Have culture and background been considered?

Why ask these questions as a carer?

These questions are tricky and usually not asked straight away, I think this could be due to challenge to diagnosis or to seek a second opinion. Nevertheless they are important questions, wrong assessments do happen and can ruin the life of a patient and their family. Notice one of the questions focuses on BAME aspects.

3 Care Programme Approach (CPA)

  • What is the CPA?
  • What does the CPA mean?
  • Is the person on the CPA? If not, why not?
  • Will I be involved in the CPA?
  • Looking for a counsellor?

Why ask these questions as a carer?

Vital to ask these questions, there are situations CPAs are pushed back or do not even occur. If you are lucky enough to be included in a CPA, it is a good chance to ask about them and there format. CPA’s are quite long important meetings and usually done once a year. Preparing for them is a must and certainly make sure your loved one gets a copy of their care plan otherwise there is no plan for recovery of living with the condition. If you are unlucky not to be involved in a CPA, perhaps ask if your loved one take a advocate to the meeting. The reason for this is if the person you are caring for is still quite unwell, then important questions at the CPA might be unresolved or misunderstood by the patient.

4 About care and treatment

  • What are the aims of the care and treatment?
  • What is a care co-ordinator?
  • What part will the care co-ordinator play in the person’s care?
  • Who else will be involved in the treatment?
  • What is your plan for treatment?
  • For how long will they need treatment?
  • Would talking treatments (eg, cognitive behavioural therapy, family therapy) be helpful? If so, are they available locally?
  • What happens if they refuse treatment?

Why ask these questions as a carer?

Some of these questions can actually or should be asked within a CPA metting or can be aimed at the social worker or care-coordinatator. Take note that plans for care can change down the line, so be prepared to repeat these questions in the future. Why would care and treatments change? because the condition of your loved one will change, unfortunately be prepared for worsening conditions, but it helps to be flexible even if we hope for recovery. Do also focus on physical health treatments rather than always on mental health because both are related.

5 Sharing of information

  • Have you asked them about how much information they are happy to share with me?
  • Will I be informed about important meetings concerning their care and treatment?
  • Can I see you on my own?
  • Would you like to ask me for any other information about them or the family?
  • Can I tell you things that will not be shared with the person or other members of staff?
  • Are their views on confidentiality clearly marked in their notes?

Why ask these questions as a carer?

Out of all the questions off this blog, these are the most important and if the answers are recorded then it will help you later on down the line. If the relationship with your loved one suffers “probably due to the condition” then its highly likely they do not want you involved, but it MUST be recorded why, plus mental health system need to be flexible to involve the family and carer enough or the pressure is back on services to admit the patient again and again. Please also notice mental health services MUST understand carer confidentiality since that is one of the mistakes that can cause patient to turn against their family.

6 Care and treatment

  • What can I do to help?
  • Are there any local self-help or carers’ groups that can help me understand the illness?
  • How can I get advice and training in the day-to-day management of the illness?
  • Are there any local groups that can provide support?

Why ask these questions as a carer?

If there is anything that I stand for, it is for carer networking, peer support, empowerment and carer connections. The golden rule of caring is do not cope by yourself. So it is important to link up with other carers and carer advocacy and support. Mental health services should identify you and refer to their own carer groups and others.

7 Getting help

  • How can I get in touch with you?
  • How do I arrange to see you?
  • Who do I contact if I’m worried about their behaviour?
  • What do I do if I’m worried that they are becoming ill again?
  • Who do I contact in an emergency? What help might be available?
  • How can I get a second opinion?

Why ask these questions as a carer?

These questions are useful for emergencies as well, as with a triangle it is important carers do not get locked out of contact, one of the many criticisms of mental health services is lack of communication and lack of contact, especially when things begin to fall apart. Get the answers and record them down or you will be lost.

8 Carers

  • What is the difference between a carer, a nearest relative and a nominated person?
  • I understand that, as a carer, I am entitled to an assessment and care plan of my own. Who should I speak to?
  • If I have specific needs of my own, who should I ask?
  • If I need help, to whom should I turn?

Why ask these questions as a carer?

When I started out caring, I did not even know I was a carer, nothing wrong in that, except you lose out on carer support. Many people are not fond of the word carer and will prefer supporter, friend or other named definitions, but as it stands there are laws to protect unpaid carers like the “Care Act 2014”. It is unwise to avoid asking such questions because looking at the page of questions alone will leave you lost. Get that carer’s assessment, because it will record your circumstances and protect your rights if things go wrong, do not think you obligated to care, but certainly protect your rights as a carer.

9 Medication

  • What medication is to be used, and how?
  • Is the lowest effective dose being prescribed?
  • Can a low dose be taken at first and increased if necessary?
  • How often will the medication be reviewed?
  • Will I be involved in future discussions about the dose or type of medication?
  • What should the benefits of this medication be?
  • In the short term.
  • In the long term.
  • What are the possible side-effects of this medication?
  • In the short term.
  • In the long term.

Why ask these questions as a carer?

I think these questions are the ‘elephant in the room’ so much boils down to how medication helps with recovery or the ability to cope. The wrong medication and mess up your loved ones life and I will cover this later, even with good medication certainly expect side effects. Ask about side effects now, so you know what to look for and do not expect your loved one to suss out what is always going on.

10 Managing the medication

  • Why have you chosen this particular medication?
  • How long will the medication have to be taken for?
  • Are there any other medications that could be used if this one does not work?
  • What symptoms might mean that the dose should be changed?
  • What should I do if they experience unpleasant side-effects?
  • What will happen if they stop taking the medication?
  • Do you have any written information about this medication to give me?

Why ask these questions as a carer?

Not all medications are alike in ability and quality. It is your right as a carer to challenge medication if you suspect they are going to cause more problems than the condition itself. Certainly explain to your loved one the importance of understanding medication, but there will be times you might have to take a step back and ask services to help out or explain about medication. These questions should hold them to account on their decisions.

11 Hospital treatment

  • Do they need to be admitted to hospital? If so, for how long?
  • If they have to go into hospital, which one will it be?
  • Will they be on a locked ward?
  • If they get short-term leave from hospital, when and how will I be informed?
  • How often will I be able to see them?

Why ask these questions as a carer?

These questions might come after an assessment, especially if the family insisted on a mental health assessment. There is nothing worse than having a loved one admitted and not knowning what is going on. Please ask these questions if the person you care for is due to be admitted.

12 Discharge from hospital

  • What arrangements will be made for their care and monitoring after discharge from hospital?
  • If I am not able to look after the person when they are discharged, what will happen?
  • Am I expected to help with anything, especially medication?
  • Do you know of any self-help techniques that will help their recovery?

Why ask these questions as a carer?

What is worse than being admitted without much notice is when a loved one is discharged and you do not know about it, especially if they are still quite unwell. So asking such questions should involve you in discharge so they dont end up on the ward in a hurry again.

SW London MH Carer Forum March 2021

Welcome to the South West London Carers forum. One of the new carer forums I co-chair along with another member who is on the involvement of South West London & St George NHS Mental Health Trust or SWLSTG for short. The carer forum is a hybrid of the other carer groups I run. What I mean by that is somethings us unpaid carers meet together and chat about how things have been going for us. Then other times we have selected speakers inform, educate and engage with us about mental health services and involvement in health and social care. The SW London carers forum started last year (2020) mainly as networking and peer support.

For the March SW London carers forum. We are continuing to seek more engagement, especially when it comes to carer strategies. The carer forum is easily one of the furthest reaching group, since SWLSTG covers mental health services in 5 boroughs that being Merton, Kingston, Richmond, Sutton and Wandsworth. A good thing about those boroughs is I have good relations with all the carer centers and one of them is contributing to my new book.

Continue reading