Category Archives: SW London Carers Group

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.

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