Author Archives: mmckenz11

About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

Sometimes us unpaid carers need to step up

smallerHello again, I have not blogged in a while, because being so active in my area due to attending events, running carer strategy forums and networking like hell. I know the title might seem a little off putting, but in my long experience of being involved in health and mental health services as an unpaid carer, there are a few things I have noticed.

Just to note, I am writing as an unpaid mental health carer, basically a carer supporting someone close who has mental health needs. Unpaid carers struggle quite a bit to get noticed, their culture is to put the ‘cared for first’ and themselves last. Perhaps it is a respected human trait, carers come with a big heart, but it does come with some risks. This is what I will be blogging about today.

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Poem – She Never Gave up

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Welcome back to my carer blog.   I guess it has been a while, but it is creative corner time.  I have received a lovely poem from an unpaid carer who networks with our forums from the NHS Oxleas services.

SHE NEVER GAVE UP

The challenges were bad
They were ever so mad
A Son she loved – lost
In the abyss of madness – tossed
To and fro from pillar to post
The Son she once knew now a ghost

SHE NEVER GAVE UP

Despite being banished from the lips of her Son
She faced the choice and won
Won the many fights but not the War
Against his brain so horribly sore
Deep inside she could see
The ghost of her Son fighting to be free

SHE NEVER GAVE UP

Poem by – Elsie Cronin

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Carer engagement – What works?

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Welcome back to another blog post from an unpaid mental Health carer. Just a day ago of this blog post, I attended and spoke at the South London & Maudsley trust Psychology and Psychotherapy conference 2019. It’s theme for this year was on involving families and carers. I was excited to be part of the event to get my thoughts out to the audience and on reflection, I felt I pulled no punches. With over 20 years of unpaid carer experience, I have seen and experienced quite a lot in regards to carer involvement and I expect there is more to come. One day I should write a book about it, but this is probably a very long way off.

Still, I feel a lot is at stake and there are times we have to be passionate because we are dealing in peoples lives, since that is the nature of business. Connecting with others at a deep, but difficult level. However when things work out, the rewards pay very high because we can reuse what we have learnt. Yes, I am talking about psychology and psychotherapy. I am no expert in these subjects, but being involved at the NHS trust and in the community for long, I suspect that I have been exposed to such powerful, wonderful and mysterious methods.

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Triangle of Care – Learning from each other

Giving helpWelcome back to another blog post from unpaid carer Matthew Mckenzie. I often blog about the situation many mental health carers face up and down the UK, however not only do i write about the caring journey, I get involved and take the initiative to network with many other unpaid carers supporting ‘loved ones’ with mental health needs.

I champion and praise many projects that work towards the good of the community, especially health care projects and the ones that take note of families and carers have my keen interest. One of these projects looks to create good practice and work towards culture change in regards to the carer journey. This policy is the called Triangle of Care, which I have blogged about a while back.

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The triangle of care works towards bringing together unpaid carers, carers’ centres, third sector organisations and mental health service providers to work together to insure best practice for mental health services.

When I attend triangle of care meetings I am often amazed at the dedication and work that many NHS mental health service providers share with each other. The lastest triangle of care meeting was hosted by Kent and Medway NHS trust over at Dartford, we were joined by many other NHS trusts where some already were members, while other are working towards joining, we also were joined by other other carers and third party community charities.

As a carer, I learnt so much about the work mental health trusts were doing and i am impressed to see many london NHS trusts attend and share knowledge about the work they do including Central and North West London NHS Foundation Trust, Oxleas, South West London St Georges, Surry & Boarders NHS Trust, Berkshire NHS trust, the Sussex Partnership NHS Foundation Trust and many more.

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One of the strong points of The triangle of care is self-assessments for existing service provision, this was achieved by Kent and Medway two years ago and I have learnt that KMPT has been awared their second star for for completing self-assessments for all community services (all mental health, learning disability, older people and dementia and substance misuse services). I would like to offer my congratulations to Kent and Medway NHS trust and hope they keep building on their success.

You can learn more about KMPT from their site https://www.kmpt.nhs.uk/

Plus feel free to check out Kent & Medways work on the triangle of care below.

https://www.kmpt.nhs.uk/carers/triangle-of-care/

Another strong point of the triangle of care is principles. Principles are usually things people can often try and remember and the triangle of care has six.

These being :

1) Carers and the essential role they play are identified at first contact or as soon
as possible thereafter.

2) Staff are ‘carer aware’ and trained in carer engagement strategies.

3) Policy and practice protocols re confidentiality and sharing information are in place.

4) Defined post(s) responsible for carers are in place.

5) A carer introduction to the service and staff is available, with a relevant range of information across the acute care pathway.

6) A range of carer support services is available

More details can be found on the triangle of care below.

No one is saying such principles are easy to achieve and a lot of hard work and dedication has gone into culture change in the mental health services. We need input from all involved being staff, patient and carers.

You can learn more about the triangle of care here.

https://carers.org/article/triangle-care

One thing I want to note is that every time I attend such meetings, I have always felt I managed to contribute as a carer, especially since I network and hold forums with other carers in South London, I feel us carers can work together and feel part of the system, rather than battling the system.

I look forward to the next Triangle of Care meeting hosted by South West London st Georges NHS trust.

One last thing to mention is we are due to hear some exciting news from the Royal College of Nursing and I hope carers will be a strong focus point in the work they will do.

I would like to thank KPMT for letting me use the photos and well done Kent and Medway NHS trust for their 2nd award.

Happy Nurses day 2019 everyone.

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Including unpaid carers in NHS Co-Production

20140621_215858Welcome back to another blog. I have not posted in a while, so thought to quickly write up a post just after Easter. I suspect I have been so busy running Carer strategy forums, that it has stopped me from writing more media. For this particular write up, I felt it was important since I have been asked over the years on my views regarding coproduction for unpaid carers in the NHS.

I have been in co-production in the NHS for close to 15 years and I still struggle with the concept, when people think of co-production, they often tend to focus on those who receive the service. Thus the patient tends to be the focus of engagement. This is not a bad thing, but we must remember not all services are alike and in the NHS there are level of services that the unpaid carer needs to access. We also must remember that mental health services cannot risk to close out those who support the patient/service user. It goes in common sense that the more people included in the support of the patient, the better the outcomes. Despite some of the odd voices that feel carers/families should not be included because they lack the understanding or experience of mental health.

There are many reasons why families and carers need to fight for their equal share of co-production, engagement and inclusion, but that is a blog for another time.

Before I continue, co-production is a vast and complex method, so one simple blog cannot do it justice, so I will revisit such a method in the future.

Why co-production is needed for carers in the NHS

The NHS is always changing and yet it is almost always the same. Sounds confusing doesn’t it? Technology, new nursing techniques and policies move the NHS forward, yet the NHS focuses on health for all and fights to stay that way. Families and carers although not using the core of the mental health services, have a vast amount of knowledge in regards to how services can empower everyone. Particularly the ‘cared for’ who are using the mental health services. No one wants to take away the power from service users/patients, but power and decisions should try to be shared to include all, especially families and carers.

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You do not have to look very hard to find out what happens when families & carers are not listened to. Mental health trusts their hospitals and services can come under scrutiny when serious incidents occur and dig down hard enough you will find a voice warning staff of ‘cared for’ health concerns. Of course each scenario should be done via a case by case issue, not all carers are angels, but it would be foolish to state the majority of families and carers have it in for the ‘cared for’.

Families & carers do not want to take power away from the patients who use the services, in fact they would rather not get involved, simply because there is no time and they would happily just want to get on with their lives. Alas the state of declining services (not just NHS) is a call to arms, not just to plead to the NHS to include families and carers, but for families and carers to sit up and get themselves noticed.

Carers included

As a reminder, this blog post is about co-production to include unpaid carers. Unpaid carers are emotionally tied to the ‘cared for’, be it families, friends or neighbours, but usually it is the families or those in the family unit that fight hard for the ‘cared for’.

In no way do I want to push aside the patient/service user or do I want to lessen the value of their experience, but if it is hard for the service user to access co-production, then culture might make it very difficult for the family and carer who by numbers alone are lacking in involvement in the NHS at all levels.

Comforting friend. Woman consoling her sad friend.

Local organisations included

As an unpaid carer, I have been lucky to engage and be involved in a number of organisations, some local and others not so local. I am talking about Carer Centres, local Healthwatch and mental health advocacy/charity organisations. We all know that it is very difficult for the NHS to shape services based on the few, so they have to rely on the third sector to also be the voice for carers. I say ‘also’ because families and unpaid carers still should be included. Without the support of the organisations, then there are certain risks that can cause co-production to fail.

This could be

  • Word not getting out to other unpaid carers to co-produce
  • No one knowing what is going on.
  • Hard to develop services for the community because only the few are listened to.
  • Relationships break down with the organisations.
  • Trust begins to break down.
  • Quality of Services deteriorate.
  • Culture of non-inclusion develops.

Supporting others in their community

If someone from a clinical back ground is reading this, I am sure they may have got into their profession because they want to support people’s health with their skills. It would be difficult to always be around the patient, so due to lack of resources and time, we need to give the skills and power for people to support themselves in their community. If the power is shared to others to help shape their own health in the community, then resources can avoid extra strain. We want people to value their own health and well-being, to do this we must educate others about the importance of health and be educated ourselves on what others think about their own health and the level of services.

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It goes without saying the more people are supported to do this, the more it filters down in the community for others to learn from those who are empowered. It is a numbers game, we need to reach out to the majority, even if starting out with the few who push to connect with others.  The network should be supported to spread the message.

Call to arms

The NHS is boring. There!! I said it!! I do not mean any disrespect, but what do I mean when I say this? Sometimes people do not rush to be involved because they cannot understand the dry jargon of the NHS. If it becomes complex, it then becomes boring. If co-production and inclusion becomes boring, then people keep away, patients keep away and unpaid carers just do not have the time. Families and carers have enough to worry about, I should know. There is not a day I am thinking to myself about the the past mistakes, regrets and worries about who I support and care for. I often think to myself, why am I in a meeting which I clearly do not understand?

Perhaps there needs to be a way where we need to produce exciting initiatives to include families and carers. Is the NHS speaking the language of the service user? Or the language of themselves e.g. NHS jargon? How can we speak the language of families and carers? Of course the NHS cannot shoulder the blame for everything, sometimes carers can be at fault being naive of our services are being designed to include them.

Making it as simple as possible

Due to what was mentioned in the previous heading, it is difficult for the NHS to include those who if they find interaction and co-production boring. It helps if the NHS can make things as simple as possible. I have seen quite a lot of material and strategy that works this way and I have seen some amazing success stories. Still there are many services that need to focus on what NHS leaflets they are producing. It is not just media or information, it is engagement, inclusion, documents, how meetings are run and organised and even training.

Investment in people

When you invest in people, it will eventually pay off. Unfortunately the NHS has a habit of investing in services, their can be a problem of looking at services alone via the cost. This is due to the culture of NHS service commissioning. No fault of the NHS, but there is a tug of war to state we should not just look at the quality of service, invest in the people who the services are being designed for. Investing in people might mean funding their projects, valuing their time, buying in those who can set an example and lead people to be included. It is not always about money either, investment can also mean time and dedication, but we need to invest to value the use of co-production.

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How to get people excited?

Maybe it is the language used? People do not all speak the NHS lingo, even though the NHS shapes so much of our lives. We need to get people excited to join in on the co-production. What can the NHS do to learn from others? How do political parties get their voters to vote? How do movies get people to watch their films? How do restaurants get people to buy their food? It is about the product? It is about getting the message across. Health is important to us all, but how can we get families and carers to be excited about this? We do not always need to have the angry carer screaming for co-production. It should also be about carers wanting to make a change and a difference.

Same old problems

Did I mention the NHS has a culture of being the same? There have been some important meetings where I am hearing from service users that the NHS tends to reward itself. We hear the same stories of influences being rewarded (usually the top awards) in the NHS all being NHS CEOs? well, there might be the odd service user or carer. Take a look at some of NHS trust’s twitter feeds to see how some trusts can be rather self serving, although it is not a major criticism since it is important to value hard working staff, but you often wonder why patients and carers are not mentioned in regards to their successes?

If getting people excited for co-production to happen, then there should also be initiatives as well. We want to reward those who lead by example. If you want co-production to spread, we have to show how it is valued on the hospital wards, the community services and beyond. We cannot just include others and then tell them ‘thank you’ and get lost. We need to value their time and reward them, but how?

What we get out of this?

It is a ‘no brainer’ this one. The first thing to change would be that service quality would improve. Next would be culture change, which is hard to change itself. People would care about the NHS services, and I mean not the few, but the many. We would have a filter down process where people would speak more about the services as they would speak about what was on TV last night. Staff would not have to feel so much pressure as there would be confidence to provide the service people want. Of course we have to be realistic, we cannot design services to make everyone happy. There will be that person who is unhappy about everything and would want change now, but that is not possible and such people will find themselves being shut out.

We want unpaid carers to be self sufficient where they are empowered to do so. We want families and carers to be included and be excited about being included. We want a culture change to reward and value those who want to see change.

Standing on the shoulders of giants

I am sure co-production sprung out of the service user movement, there must be many examples out there, especially due to the mistakes psychiatry made in the past. E.g. the persecution of LGBT groups, institutionalization, misunderstanding and high death rates of BAME patients, problems of being quick to label others mentally unwell due to new diagnosis and so on. I will not pretend I know everything about co-production and I should not be celebrated in doing so. However I will admit that we all can and should contribute to co-production, even if it fails, it still sets an example to the next generation.

Triangle of care – Excellent NHS carer engagement

10177241_747738765268892_5890142387668348507_nIt has been a while since I blogged off my site, almost a month now. Still I have been very busy, lots going on and still lots to do. I run 4 carer forums each month and am also an unpaid carer working part time and contributing to so much in the community.

Yet I am aware many unpaid carers supporting those with mental health needs cannot easily engage with services. This is one of the many reasons why I chose to write this post. I am an unpaid mental health carer in south london, and have been involved with the Triangle of Care at a high level. Due to the involvement I am proud to be part of such a successful initiative. My trust has not been part of the Triangle of Care scheme even though I battle on, but it has got me wondering.

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What would it be like to be a carer whose NHS Trust is part of the Triangle of Care scheme?

If you do not know about the Triangle of Care policy, let me enlighten you.

Taken from the Carers Trust website, which is national charity fighting for the rights of young carers and carers alike.

“The Triangle of Care guide was launched in July 2010 by The Princess Royal Trust for Carers (now Carers Trust) and the National Mental Health Development Unit to highlight the need for better involvement of carers and families in the care planning and treatment of people with mental ill-health.”

Many Mental health NHS trusts up and down the country have taken the challenge and value the needs not only of their patients/service users, but also unpaid carers who often can be forgotten in Trust Policy, let alone in government policy.

The triangle of care gives six standards

1) Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
2) Staff are ‘carer aware’ and trained in carer engagement strategies.
3) Policy and practice protocols re: confidentiality and sharing information, are in place.
4) Defined post(s) responsible for carers are in place.
5) A carer introduction to the service and staff is available, with a relevant range of information across the care pathway.
6) A range of carer support services is available.

I have mentioned such standards because there is a lot more to the Triangle of Care, but if you are not versed in policy then at least focus on the standards above.

So what could it be like being a carer linked to ToC?

If you are a carer whose mental health trust has signed or is working towards the triangle of care, I will list why it perhaps is a good thing.

1) You are lucky enough to have a trust working towards a national standard.
2) As a carer you can learn more about what your trust is doing for carers and their loved ones.
3) You can use these standards to protect your rights.
4) You have a mental health trust that can link into partner trusts all working together for the good of unpaid carers.
5) Standards that can be measured and assessed by others.
6) A mental health trust brave enough to change its culture on unpaid carers.
7) A way to hold mental health trusts to account on how it engages and provides services for carers.
8) Hidden issues that can be unraveled by triangle of care.

Obviously the list can go on and continue to go on, but an NHS trust that can put some resources to the Triangle of care should be held in high regard among carers.

I am not saying that the system is perfect, it is NOT a quick fix solution, especially in the era of NHS cuts, cuts to staff, cuts to community services and a lack of understanding in mental health. We are also living in a complex society where so much is demanded from us, be it Brexit, having to struggle for education, fragmentation in communities and the lack of volunteering since everyone wants to be better off.

All I am saying is if you are an unpaid carer thinking how can your NHS trust support, engage or value you, then please see what they are doing with the Triangle of Care.

Although the triangle of care is going through some changes. You can find out more about the Triangle of Care below.

https://professionals.carers.org/working-mental-health-carers/triangle-care-mental-health/triangle-care-membership-scheme

 

Gone too Soon

Sad man sitting head in hands on his bed in a bedroom at home

Just to note this particular blog can be triggering and not just for those suffering mental ill health needs, but also for families and carers.

As you can tell by the title of this particular blog post, this centres on the devastating experiences which mental ill health can cause to families and loved once.

There are some families that do not often get a chance to share their experiences when something tragic has happened to the person they are trying to support or care, although I know full well that this can also happen two close friends, relatives and perhaps even a neighbour.

As a care of myself I know in the back of my mind that there will a time when I will have to fight a mental health crisis for the person I support. Perhaps I will succeed, but I know out there carers up and down the country will have to deal with the devastating experiences when a loved one by finally succumbs to mental ill health.

melancholy and sad young  woman  at the window in the rain

I’m afraid I’m not going to pull any punches, when I mean succumb to mental ill health. I am talking about suicides, deaths due to addiction (alcohol or drug related), death Due to an accumulation of medication side effects causing massive strain on physical health. I am talking when the mental health sufferer cannot cope anymore with dementia, Parkinson’s or degenerative illnesses affecting the brain.

I am not going to use this blog post to lay blame at anyone’s door. However I just would like to raise the issue that’s such experiences need to be highlighted and discussed. We should never expect families and mental health sufferers to just cope and get on with it.

Coping with death

It is never easy to try and deal the situation when someone loses a loved one two mental illness. Unpaid Carers and families can often blame themselves as if they feel they have not done enough to save the loved one’s life. Some people think mental illness can only affect the one person who has been diagnosed with the condition.

In some ways this is possible, but not often the reality. We should try to avoid putting people in boxes. When death strikes a family due to mental ill health, i’m sure that grief, depression and anxiety will affect those that was close to the patient or service user. If you were a carer caring for someone long-term suffering from mental health, the grief stricken experiences will climb to unsustainable levels.

As unpaid carers it is important to respectively raise the awareness of coping with death, especially if you have been a long time carer. We all need to work together with the health services and our loved ones to avoid situations where patients might end up being failed by the system.

If anything off this post has affected you please call Samaritans on

116 123 (UK)
116 123 (ROI)

Thanks for reading.