Tag Archives: unpaid carers

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.

Carers Rights Day 2018

smallerBefore you read this blog considered this, if you are an unpaid carer think of all the outcomes that you have experienced so far. Think of all the hardships that you and the person you care for has gone through.

Carers rights day

Every year organisations that deal with unpaid carers and support those using the health services come together and try to raise awareness of unpaid carers. CarersUK promote the awareness day and theme this year is “caring for the future”.

carers-rights-day

Just so you know I will introduce the few terms in this blog. When I talk about an unpaid carer, I am not talking about a care worker.

Continue reading

Speaking up as an unpaid carer

Big problems - daughter comforts senior motherAs you may or may not already know, this website is dedicated to unpaid carers and raising mental health awareness. An unpaid carer is someone looking after a relative or someone close who has physical or mental health needs. An unpaid carer is not a care worker, carer workers are paid to provide support and can do most tasks out of choice, while unpaid carers do their role almost out of desperation.

This particular blog is about giving unpaid carers some inspiration to get their voices out there. Why is this? Because if carers do not speak up then it is hard for mental health commissioners or health services to work with carer needs.

Embed from Getty Images

Being a carer can be daunting as very few suddenly expect to provide care at a specific time, although most feel that there will come a time when they have to support aging parents, unwell partners or even a friend. When caring for someone with health needs, there can be some relief that the ‘cared for’ has some idea what support they require. This can be be tricky if the ‘cared for’ has mental health needs and due to mental capacity issues refuses care or support.

It is vital carers raise their voices regarding such issues, especially if they live with the ‘cared for’. Many carers just cope from day to day thinking there is no need for support for themselves, but if the carer falls unwell then who will provide support for the ‘cared for’?

Closeup on hands of stressed young housewife

If you are a carer, do not feel worried, frightened or scared to speak up about your caring experiences or caring journey.

So where can carers speak in regards to their caring journey?

There are several places and one of them usually can be at a focus group, especially if its run by a mental health service. The service may want to hear what carers think about a particular service provision, so it is vitally important carers take the time to provide opinions.

Other places could be about a mental health service carers strategy, or a mental health awareness event setting. Carers can also speak up about their caring role at a carers support group, which is vital if a carer needs to let off stream or get something off their chest. Sometimes a carer issue cannot be solved overnight, but most carers do with to be heard or listened to.

Other places where carers can speak is at carer forums, I chair many in south London and look forward to hearing carers ideas and suggestions. Carers need not complain, shout or always play the blame game. The focus is on how we can all work together although I am aware of the frustration with services and feeling that carers are not being listened to or not being taken seriously.

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If you are caring for someone with physical or mental health needs, please check out any important health events in your area. You have given so much to your family, friend or the community, it is time to be heard.

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The Care Act 2014

care-act-2014Welcome to another blog post. This time I want to focus on the Care Act. The Care Act 2014 is a major piece of legislation to put unpaid carers wellbeing as a priority. Carers have faced hardship and lack of identification regarding their needs for a long time.

When I talk of unpaid carers, I am talking about those who are caring for a loved one, relative, close friend or even neighbour. The Care Act 2014 heavily focuses on those who are WILLING to care and tries to avoid the casual carer. Unpaid carers go through so much and there are unfortunately still major problems with the Care Act.

The main focus for the Care Act is that

– Carers are entitled to a carer assessment
– Puts carers on an equal footing with the cared for
– Increases identification of the carer needing support

If you have the time to watch the video I have made explaning some of the basic parts of the Care Act 2014, then please do so by clicking on the video below.

The video covers the following

  • The main focus for the Care Act.
  • What carers need support on.
  • Problems with the care act.
  • What you or your family can do regarding carer assessments.
  • Local Authorities responsibilities.
  • How carer needs are provided.
  • What happens if you refuses an assessment?
  • Care and support plans.
  • Safeguarding.
  • Independent advocacy.

Although I mention that the Local Authorities have responsibilites, so do health boards, mental health trusts, housing officers, social workers, assessors and so on.

The Care Act can be a major force for carers like myself up and down the country, but it is only as good if carers or carer advocates do not know their rights. There are those who will take every chance they can get to ignore the Care Act and misuse their powers to prey on the vulnerable and when I mean vulnerable, it is not just the carer alone, but also the cared for. Still not every carer is an angel and there are safeguarding issues in some families, but as it stands the Care Act looks to prevent such crisis before they happen.