Tag Archives: carers

Lewisham Mental Health Carers forum June 2021

Welcome to the June update of my Lewisham mental health carers forum. For the month of June my MP Janet Daby who attended to speak to unpaid carers and update us on what Lewisham has been doing for unpaid carers since carers week 2021.

Also in attendance was Jo Power who is the Liaison Officer for the Parliamentary and Health Service Ombudsman.

Cath Collins – Carer support worker presents on her role.

Before Janet spoke about unpaid carers, I felt it important that Cath Collins had a chance to speak about her role and her passion to support mental health carers. Cath Collins used to work for SL&M as a carers support officer, but is now employed by Lewisham council, but in a similar role.

Cath spoke about what she is employed to do and what she has been doing. Her remit is with the adult community mental health team. So she does not work with CAMHs, the children, adolescent teams, the older adults. She spoke about how we have primary mental health care teams in Lewisham, which is part of a new transformation of services, that should be aligned to GP practices.

Cath also spoke about having community teams where people have a longer period of support who suffer from serious long term mental health conditions. She mentioend we also have specialist teams in between, which are Early intervention services, which is for people in the first episode of psychosis, regardless of what age they are SL&M also have a personality disorder service.

Cath’s remit is to work with the teams to look at several things where one of them is to look at the information that they give to families and carers. These being are they getting the national up to date information? Other things focus on is such info good information about diagnosis? how to care for someone with a specific diagnosis? being involved in discussions around the care? If not, then why not? and how we could work on it?

With advice and information service, Cath reminded that they have got a group tonight, which is a mental health care support group where people can attend and speakers will go through important topics.

Janet Daby section.

I consider it very important MPs and those who lead on social care engage with those who are vulnerable in the community, especially if the group is grassroots and self-led. I am sure there are reasons why representatives would not want to speak to vulnerable groups, but those reasons are very few and far between.

It is also a two way thing, not only is it important for MPs to link with unpaid carers, but also unpaid carers understand the importance of forming relations. Too often I hear from unpaid carers that they are in an urgent situation and wish for counsel, which is fair. However I wonder in the back of my mind if something could have been done before things got out of control. It might be usually up to carers to keep their ears to the ground and find out what is really in store for them, even if they have the unpleasant task of trying to hold health and social care leaders to account.

Janet mentioned that Carers Week, which took place this year from 7 – 13 June, is an important opportunity to recognise, value and support unpaid carers. She felt that the Government must properly fund respite breaks so carers can put their own needs first, and ensure they can continue to provide vital, life-saving care and support. She knows that this is something that both Carers UK and the Association of Directors of Adult Social Services have been calling for.

Janet remains concerned that until there is long-term investment in social care, unpaid carers will continue to be overwhelmed. After a decade of cuts to local government, £8 billion has been lost from adult social care budgets and too many families have been left to cope without the support they need.

The Government first promised to publish its plans to reform social care over four years ago. Despite repeated promises, Ministers have still not brought forward any legislation, new funding, details, or timescales for reform. The recent Queen’s Speech, setting out the legislative agenda for the year ahead, was absent of any detailed plans.

Janet continued speaking to our group about being happy to attend and meet with us even if it was more than once a year. She spoke about her plans and concerns about the SL&M’s Ladywell unit and her plans to raise queries and questions with the chair of SL&M. I asked questions about Lewisham’s focus for carers and how those who lead on social care could engage with our group where Janet mentioned a few people. As a group we have been struggling to get engagement from those who lead on social care, but in other areas of London it seems easier to get that engagement, other carers have mentioned it is not worth the hassle, but I feel it is important to get such engagement even if they respond with bad news. Nothing is worse than being ignored and left to try and support others going through isolation, exhausting and feeling they are not being heard.

Jo Power Ombudsman presentation

Jo spoke about The Parliamentary and Health Service Ombudsman and the focus was on Who they are, what they do. Jo spoke about how the Ombudsman works and makes it’s decisions. Basically the PHSO was set up by Parliament to provide an independent and free complaint handling service. It is the final stage for complaints about the NHS in England.

The PHSO staff considers on the following.
– can they investigate?
– should they investigate?
Other factors include
Suitable complainant
Time limit
Legal remedy
Another organisation that could be involved.

Jo also spoke about how the PHSO gave’s evidence in the form of.
– Hearing from both sides
– opportunity to tell the PHSO what lay behind clinical decision making
– clinical records
– CCTV, phone records
– witness statements/visits/interviews

There was also an explanation about how the PHSO investigate complaints. As they look to see if what happened was in keeping with relevant regulations, standards, policies and guidance or established good practice. If it wasn’t, the PHSO look to see how significant the shortfall is and the impact that it has had and, if it has caused hardship or injustice, if that has that already been remedied by the organisation.

The PHSO also work with the following organisations.

Stats and figures were given for the carers group to digest from 2018/19

112,262 enquiries received
82,998 enquiries resolved through advice or re-direction

28,841 complaints handled by casework teams
24,183 complaints were not ready for us
5,658 decisions were made including:
746 investigations upheld
871 investigations not upheld
3,597 assessment decisions
444 resolutions

The PHSO also updated us on what they have been doing recently. As from last year they ran a public consultation to get people’s views on the draft NHS Complaint Standards. The consultation generated a lot of interest and feedback. On 24 March 2021 they published a report that set out the responses they received and explained what they did and the changes they made in response to the feedback.

There was a long Q&A session regarding the PHSO’s work and how the focus can be influenced by unpaid carers. This was the short update for my Lewisham’s mental health carers forum for June.

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.

Carers Week: Support in Southwark: Carers

Do you know Carers Week 2021 starts on monday 7th of June?

The theme for this year is Making Caring Visible and Valued. Which is good news for Southwark since Southwark Healthwatch are running an event where unpaid carers in Southwark can learn about the different types of support available for carers in borough. There will be guest speakers from various services such as Southwark Carers, Mobilise, the Carers Leads from Southwark Council and Coach4Carers to speak to unpaid carers about different ways they support carers.

There will also be a Q&A session after each speaker to answer any questions you may have.

I will be opening the Southwark Healthwatch event and hope to see many carers learn what support they can get for carers week.

To book on the event see the details below

https://www.healthwatchsouthwark.org/event/2021-06-09/support-southwark-carers

Lewisham BAME MH Carer Forum April 2021

Hello everyone. Welcome to the April update of my BAME mental health carer forum. This is one of the 7 carer forums that I run that is specifically aimed at ethnic unpaid carers who care for someone suffering mental distress or mental illness. It is hard for unpaid carers to often get a voice, understand mental health services or even be identified by health and social care. There is a push for ethnic inclusion, but a lot of it is patient centered. So this is one of the reasons why I started a BAME MH carer forum, there are of course more to come.

For this month’s speakers we had the following.

Dr Juliana Onwumere who is a Senior Lecturer and Consultant Clinical Psychologist. She is also the Institute of Psychiatry Psychology and Neuroscience Carer Champion

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Connecting with BAME mental health unpaid carers

Welcome to my latest unpaid carers blog for May 2021. As you might already know, this website focuses heavily on mental health unpaid carers. What I mean is the focus is on families and friends caring/supporting someone who suffers from mental illness.

I run many peer support groups and forums that bring unpaid carers together. The groups are carer led, but try to work with the mental health and social care services. This helps to give unpaid carers a voice and also a chance to understand the complex mental health, health and social care system.

As we all know service users or lived experienced have a range of avenues to express their voice and I guess that is important because they need to, after all they are using the mental health services and the quality of their lives and wellbeing is often tested. All I ask is that friends, families and those emotionally tied to mental health survivors should not be forgotten.

Unfortunately this needs to not only extend to mental health unpaid carers, but those from ethnic communities. Drill down deeper and you will find different levels of quality amongst ethnic unpaid carers. Usually black unpaid carers tend to struggle as their loved ones fair worse off in regards to mental health services.

Below is just some key factors.

  • Black men were more likely than their White counterparts to experience a psychotic disorder.
  • Large numbers of black people more likely than average to use high end mental health services.
  • Detention rates under the Mental Health Act higher for people in the ‘Black’ or ‘Black British’ group than those in the ‘White’ group.
  • Even with higher detention rates, the outcomes for black service users are still overwhelmingly poor.
  • Suicide rates are higher among young men of Black African, Black Caribbean origin, possibly due to other complex factors being :-

  • Racism
    • Access to quality services
    • Opportunities
    • Mental health stigma
    • Inequalities

With all the above mentioned, it does not take long to see the impact filter down to black families and unpaid mental carers. The strain is increasing and black unpaid mental health carers tend to just shrug their shoulders and cope with it all, as they have been trying to cope with complex inequalities while pushing back to avoid the outcomes their loved ones experience. It does not take long for a BAME mental health carer to cross that line to BAME mental health survivor….if they survive that long.

As an unpaid carer, I have experienced the hard road many BAME carers have faced and this is why formed and pushed for connections with many other BAME carers, they do not have to be black as other ethnic carers can find solidarity and identitfy unpaid mental health carers face.

There is still stigma, predjudice, discrimination and inequalities in society, a lot of things have changed and some things have improved, but it would be foolish to ignore the impact of race and mental health.

The candle needs to burn at both ends as BAME mental health carers need to come together and share their experience with the mental health, health and social care services on what is working and what needs to work.

If you are a BAME mental health carer, check out my online BAME carer groups below.

Greenwich Mental Health Carers forum March 2021

Welcome to my Greenwich Mental Health carers forum update for March. This is the 2nd Greenwich MH carers forum for 2021, since this is a fairly new forum aimed at families and carers who are caring for someone with mental illness.

The forum is not a support group, although there are times discussions may dwell on a supportive nature as members switch to talking about their own unpaid caring experiences. The Royal Borough of Greenwich MH carers forum aims to give families and unpaid carers a chance to talk to Mental health, health and social care services about how they can also support carers. The forum is a chance at engagement, involvement and empowerment for unpaid carers who would like to know what is going on with services. There also might be a chance to influence services when the Royol Borough of Greenwich mental health carers network grows in numbers.

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Lewisham Mental Health Carers forum March 2021

Welcome to a brief update of our March mental health carers forum for the borough of Lewisham. The carer’s forum is chaired by unpaid carer Matthew Mckenzie who runs many engagement and peer groups in South London aimed at families and carers who care for someone suffering mental illness or mental distress.

The speakers for the month of March 2021 were

British Institute of human rights.
Wendy Dewhirst SLaM new Community manager for Lewisham.

BRITISH INSTITUTE OF HUMAN RIGHTS PRESENTS.

It is clear that unpaid carers have rights, otherwise we would not have the ‘Care Act 2014’, but what is not clear is how unpaid carer rights are linked into human rights. This is why I am linking carers to understand more about human rights.

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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.

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Joint Southwark & Lambeth MH Carers forum February 2021

Welcome to february’s Southwark & Lambeth MH carers forum update. This forum is aimed at those who care for someone with a mental illness. The forum gives families and carers a chance to understand the complexities of mental health and social care services.

For February, we had the following speakers who were kind enough to have a chance and engage with carers, even if it ended up as a friendly debate. Although the forum represents Lambeth & Southwark carers, membership is open to many carers outside those boroughs, because I feel carers should network, connect and learn from each other.

The following speakers for February were.

  • Lee Roach who is the SLaM’s Occupational Therapist and carer lead for Lambeth inpatient wards
  • Rebecca Martland who is a PhD Researcher and Physio engaging with carers on the High intensity treatment exercise
  • Sam McGavin & Sophia Stevens from Southwark Council developing Southwark’s carers partnership
  • Annette Davies who is a carer working towards developing stronger networks to carers including a BAME carer group.
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Covid-19 vaccine – Its safe and necessary

Welcome to my latest blog post by unpaid carer Matthew Mckenzie from South London. I thought to do a quick blog and do my bit regarding COVID-19 Vaccines and the importance of getting the vaccine when it is offered to you.

As you probably already know, just by looking at my photo. I am a black person. It was only in 2019 that health services were put under immense pressure due to the impact of the virus. Not just the health services, but social care, the economy….come to think about it practically everything. Up until now many unfortunately people have been taken from us because of this terrible virus. The old and young, black or white and rich or poor. No one is truely safe, especially those who high risk COVID infection jobs or those from poorer backgrounds. Those from BAME groups have a higher risk of catching the infection and are still suffering the worst outcomes. It does not help that the history of health and social care has been at odds with those from a BAME background.

Fast forward to now there has been many changes and developments. We in the UK are lucky to have access to COVID-19 Vaccines and it was not long before I was offered mine. As a carer and a black person, I was still in two minds about getting the jab.

I must admit I am in many whatsapp groups, plus facebook groups and so on. I often received emails warning about the vaccine and how black people were being tested for eradication, or how my hair would fall out (well I don’t have that much left anyway). Most people I came into contact with discussed the importance of having the Vaccine, while others did not want anything to do with it. Looking back on what we all have been through in 2020 certainly made up my mind. I have lost too many people to the virus and when I was offered the vaccine, I took it.

The day of vaccine jab, I felt a little nervous, I was not sure what to expect or if I would get an unfriendly service. I admit it was so easy to book the appointment online and the location of the vaccine centre was very easy to get to.

I was greeted by friendly staff at the GP surgery who asked appropriate questions before I was due for the vaccine. It was not a long wait and every one was friendly. I filled out a form on my health backgroud, which was also very fast and waited for my turn.

I did not see anyone being dragged into a room and given the shot, people could change their mind anytime and to be honest every one was calm and quite. As soon as I was in the nurses treatment area, the jab was so quick that I hardly noticed it. There still some worry about side effects, but its been 2 days now and apart from a sort arm I have had no side effects at all.

I felt that after all the worry, the COVID-19 vaccine is completely safe and we as black people need all the defense we can get from the virus. There is no conspiracy to wipe out the black race or put microchips in them. We won’t be made infertile, because there certainly is no serious data on clinical trials pointing to this.

It still is important to wear a mask, because no vaccine is 100% effective and so it is important to practice social distancing. I urge those from a BAME background to take the vaccine because we have suffered enough not just from the virus but the difficult roles that those from a BAME background have to do be it in the NHS or social care. I certainly urge carers also to take the vaccine because if you are caring for someone vulnerable and you catch the virus then you put the person you care for at greater risk.

We all must do our bit and protect ourselves, our community and our loved ones. The virus does not really care if your black or white, rich or poor. The virus’s job is to infect you and you have to roll that dice to hope it won’t kill you or spread to those you are trying to protect.

Do yourself a favour and take the jab.