Tag Archives: mental health

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.

On reflection, I was asked by the NHS Trust therapy adviser, what does it feel like to be involved as a carer, what does work and what does not? I felt this was such an important question to ask at the conference since I am not sure how far my influence goes to other carers I network and engage with, which seems to be increasing rapidly. I can only pass on my knowledge and hope others can learn from me.

What I feel works for being involved as a carer

I hope to make things as simple as possible, this is not an exhaustive list and is not in order of importance, however if it was, then “identify me” would be the first. If a carer is not identified and recorded, then it is hard to engage or listen to them.

– Identify me
– Ask me
– Listen to me
– Clarify if you are not sure
– Be patient with me
– Respect me…to a point
– Forgive me
– Involve me
– If involving is difficult, then update me
– Sympathize with me
– Refer me
– Assess me
– Empower me
– Understand me
– Engage with me
– At times I need therapeutic support
– Mind your language

I told the conference that I need to blog about this due to lack of time, but I hope staff can learn from what I have listed. I have also been asked by a carer to write some checklist of what carers need to take note of when starting out on a caring journey. Lets look at this list more closely.

Identify me

Schizophrenia depression male head silhouettes. Ripped paper Male head silhouettes. Concept symbolizing schizophrenia, dementia, depression.Vector available.

I told the conference that it is not only the NHS trust that is having a difficult time identifying carers, many NHS trusts are struggling. What could be the cause? There are many difficult and complex reasons, however leadership is important, then comes the system information is placed on, then training and then learning from audits. As a carer, if someone comes up and asks if I am a carer, then it can put me at ease, although this is not the same for others as the word ‘carer’ scares them.

Ask me

Sometimes an patient does not want to engage with the service, so I suspect that health professionals should at times request help from the carer, especially if they want some history of the patient or service user.

Listen to me

There have been times when an NHS staff would tell me that they cannot listen to me and hung up the phone. This was not common incident and I never complained, because I thought this was sometimes standard procedure, but there was also this fear that if the staff was reprimanded, who would replace them if they were going to be replaced at all. I would often think to myself if it was me being unreasonable or if the health professional was going through a god awful time at work. Even if just listening and saying nothing, would at times be very helpful to me.

Clarify if you are not sure

There is no shame in getting things wrong. I would much prefer if the health professional ask for clarification on an issue before making decisions that turns out to be wrong.

Be patient with me

There will be times, when I feel my world is collapsing in. It is true that a support group can helpful, but carers cannot live in a support group. They do not know hardly any coping skills or are given much apart from carer assessment, which unfortunately is mainly recording information rather than relationship forming. The state of the Mental Health system tends to focus on the “service user”, after all they are using the service? Thus families and carers eventually build up some resentment or misunderstandings against the goodwill of staff, unfortunately staff might have to be patient with carers.

Respect me…to a point

I do not know the case loads of NHS Staff, nor do I aim to be confrontational. I can only think it be fair if health professionals not loose their temper, raise their voice or be very blunt. Still, we are all human and most of the time I have seen carers pick up mental health needs due to being worn down by the system.

Forgive me

Did I mention we are only human? Expect mistakes from me as a carer, I just do not understand the system at times and things change. I sometimes will make mistakes, say the wrong thing out of emotional turmoil or even fail to engage. I can only hope health professionals see families and carers as fragile at times. They have a lot to cope with depending on the situation.

Involve me

This extends to all that is mentioned in the blog, most families and carers hate being shut out, worse they hate being separated from who they are trying to support, especially when they are in crisis. Carers want to be invited to meetings, copied in on some emails, recorded as in need of assistance or referred to a carers network.

If involving is difficult, then update me

Not all times can families and carers be involved, it really is a case by case method. Sometimes the relationship between the families and patient has broken down. It happened to me, but what I do not want to hear is “Good bye and good luck”. Or told that to be involved in someones care, I need to go through them. Real life does not work like that, family ties or emotional ties are not just cut off and things are strained.

Sympathize with me

Health professionals do not really have to be sincere, they can just try and sympathize. I am aware not everyone can be like this. Sometimes there is little that someone can do about a situation, life can be like that. Carers can really depend on what someone says or does. I am well aware that after a while health professionals can become thick skinned and it rubs off on who they deal with.

Refer me

Not all families and carers want to be isolated and left to cope. There are so many resources and groups crying out for carer participation. This also goes to GP practices who do not refer carers to carer centers or groups. Lord knows how many times I have heard the carer centres I attend mention this, I am not sure whats the best way to tackle this either. After a while, audits and records show carers being missed out by systems. Maybe we are just all so busy being under pressure from deadlines and schedules.

Assess me

psychology problem question mark with profile concept

Being assessed as a carer is not my favorite past time. Mainly because I think not much comes out of it. I am not expecting any funding or financial help, but it is important there is a ‘carers’ pathway or plan. Once I have a carers assessment, not much else is heard from it or even referred to. I just wait for the assessment next year and do the whole thing again. Still, Carers assessments are an important part of a carers journey, health professionals get to pick up information that can help in decision making or support the carer in case something is picked up that the carer needs to prepare for. Unfortunately I am at the stage of querying if assessments are being done and who is doing them and what this leads to. A very painful journey. It is not only carers assessments that can help carers, there are other means of assessing the carer, but somehow it must be relationship forming. I can only pour scorn at how the system has turned out where the Local authority does the assessment without much of an idea of the carer and/or patient and then disappears. No relationship, lack of follow up, lack of preparation for the assessment and god knows what else.

Austerity anyone?
Empower me

Family

I am not really expecting the majority of health professionals to do this. This is mainly aimed at trust carer leads, involvement leads, engagement leads of trusts and CCGs. Families and carers know full well that there are other carers out there going through the same issue. They want, ought and should network and learn from each other to learn how to navigate the system. It should not be that a mental health trust should be the gateway for carer empowerment, but NHS staff should work on bringing carers together. To many times on involvement I see the same person doing so many things. The more carers connecting and helping each other out, the better. Carers are crying out for carer peer support, some areas around the UK fair better, not sure how or why.

It is not always the health systems fault, carers need to be encouraged and face that they cannot do the journey alone. The health and social care system to so vast and complex as it is. To make matters even more difficult the system can be held to government policies, which in turn lacks engagement to the community, especially if the community is fragile already.

Carers must be empowered to help themselves, help each other, be a critical friend and engage with health systems. Carers must be involved query why things are the way they are and not be told nothing will change.

Understand me

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This is difficult if I am not identified as an unpaid carer, although it is not a hard and fast rule. It is all about relationship forming with the carer, sometimes there will not be time for this due to caseloads and lack of resources. Still, with every talk, meeting or engagement with a carer, there is a chance for the health professional to understand the carer. What is the carer saying, how are they saying this? What is their body language? Things like that and more.

Engage with me

If I loose my temper out of frustration, I can understand why there is lack of engagement and sometimes when things go desperately wrong, I can understand why the health professional wants to hide. I have seen it happen to myself when a carer has been failed by the system and lashes out at anyone and everything. This in turn makes me think if I have done something wrong. It is only natural, but if engagement is completely cut off we then validate the systems failures. I can only hope there is some form of recovery where both the patient, carer and health professional work together to tackle the issues of recovery.

At times I need therapeutic support

This is severely lacking in the system. Maybe staff are not as trained in therapeutic as they used to be. There is just lack of time, everything seems to be more processed these days, I am not sure what is the correct word for it. I suspect because of safeguard standards, auditing, confidentiality, protocols and lots more. It can be tough to talk to anyone because of the way things are. I am probably one of the most connected carers in the country and yet still feel cut off at times, imagine this for carers not involved much or have little idea of the mental health system or even health system.

Due to a lack of psychotherapists in the NHS, carers just have the support group, which unfortunately can lack the time and tools to tease out what issues the carer is tackling mentally. This leads on unfortunately for carers having to become empowered and try support themselves. It does not help if the support group is only running once a month, even though there maybe more than one support group running in the area. An unpaid carers mind does not just switch off after attending a support group. There must be other resources tooled so carers avoid ending up as the patient, but how? Another blog for another time.

Mind your language

It only takes one word, just one word to trigger the carer for life. It is so important, especially in the mental health system for people not to judge, we are all suffering. Yes, some more than others, but it is not so easy to tell. Some are very good at keeping it all in, some have the tools just to cope, but we all know that coping is not enough, there needs to be some healing process.

Back on to language, out of all the warnings, this is one where I can just about forgive. Life is so fast paced that we often do not think what we are saying, we do not even think about the impact of what we say. Say the wrong thing and the carer could just give up caring. This one is very tough, we cannot just easily train people to understand the triggers. I suspect receptionists at GP surgery can be prone to this. It is foolish to think access to health system only starts and ends with the health professional. From the ward cleaner to human resources, we all promote health and need to be aware of how we engage with others.

What I feel might be difficult for me being involved

I am going to update this list in the future, but thought to at least compile the list

– A rule of thumb, the opposite of what has just been mentioned
– Avoiding me does not work
– Not respecting my confidentiality
– Being rude
– Not responding
– Not listening
– Failure to refer
– Politics
– Jargon as a barrier
– Not acting on carers judgement
– Lost information

Thank you for taking the time to read this.

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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.

meeting

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.

meeting 2

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.

Top 70 Contributions to Psychiatry and Psychology

Relationship psychology concept created with man and woman heads profiles, vector logo or symbol of gender problems and conflicts in family, close relations and society. Classic style simple design.Its been a while since I have made another video. This one is back on the psychiatry field. In this video I have introduced a list of notable figures who have made an impact on sub fields of psychiatry.

I have made a video which can be viewed below showing the top 70 contributors to different fields within psychiatry.  It was not possible for me to include anymore due to time and length of the video.

The video includes names such as :-

Adolf Meyer
Carl Gustav Jung
Elisabeth Kübler-Ross
Eugen Bleuler
Eve Johnstone
Franco Basaglia
Frantz Fanon
Hans Steiner
Jaakko Seikkula
John Cade
Pierre Janet
Robert Spitzer
Seymour Kety
Viktor Frankl
Wilfred Bion

…and many more.

Hope you enjoy!!

The stigma of an unpaid Mental Health Carer

matthew-mckenzieWelcome back to another blog from unpaid carer in the south of London. As world Mental Health Day draws near, a lot of emphasis is placed on those suffering angel problems. I find it quite important that you must not forget the hidden Heroes who’s tape in when their loved ones are in most need. This is not to take away the difficult battles mental health survivors face, however all too often sigma hits out at more than one person.

Mental health stigma hits the family, the friend, the husband, the wife and even the neighbour. This blog will concentrate on another type of stigma, which can be all Too Well forgotten. I am going to talk about carer stigma. Now it is very important that not all unpaid carers suffer from carer stigma.

First you must differentiate what or who is an unpaid carer. I am talking about the person who suddenly finds themselves caring for someone close to them who has been unfortunate to pick up either physical or mental health problem. I am not talking about paid care workers, although I do admit care workers to find they can have a difficult job, they are paid for their role and can be protected by Union.

Arguments.

With carers they are not trained and often care out of closeness and love for the person they are trying to look out for. It gets really difficult if that person has a mental health illness.

The types of carer stigma.

So Let’s Begin, I cannot really produce an exhaustive list of different types of carer stigma, but the ones that i am showing i’ll probably the most recognisable types of carers take life out there.

Depends on the illness.

When a loved one become very unwell, he often try as hard as he can to support them. The problem is the more chronic the illness the more is stigma lash out. A good example is when a carer is caring for someone suffering psychosis, those suffering from this difficult illness can often present challenging behaviours. If such behaviour is out in public, then the challenge is not only faced by the mental health Survivor but also the carer.

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It only takes one person to ridicule the suffering from a mental health problem. This can then extend to the person family, the risk is once a community starts to gossip about the situation, it can cause the carer to become more isolated. This in turn leads to stigma of both mental health and carer. As a note not or carers go through this and it probably can depend upon the illness anyway.

The Label

Although not as devastating as the first form of carer stigma, it still can be rather destructive. Some people carry on caring and supporting those close to them out of desperation. They carry on caring regardless of the support mechanisms that amen applied to the family network.

At first it seemed really brave, it is great to hear a carer battle it out no matter what the situation. However there is one big problem, no matter what are the carers might say to this situation, the person still feels that they do not deserve the term of being labelled a carer. The problem is that this person will then like the support network available for carers.

Clashing forms of relations

This type of stigma is actually quite similar to the one mentioned previously. A good example is when a person marries someone they marry for better or worse. When the worst does arrived, the person cares especially out of love. They care because they are either the husband or wife. If you try to tell them that they are now a carer, that person may become very irritated. They refuse to be labelled as a carer, and yes this is the right, but the risk is lack of support network available to them.

This care stigma can also extend to other relations within the family, another good example is a young person caring for a parent, or even especially a young carer. Can you imagine as a child having to suddenly provide care for an older adult suffering a mental health condition?

The terrible characteristics of an unpaid mental health carer

There are several characteristics, which are aimed at carers. I am going to go through a few that come off the top of my head.

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Being labelled as lazy

All too often we have to work for a living, we have to pay our dues. The harder the work we do, the more we expect to be paid. The more complex the role, the more we expect be rewarded. There is this review going around that the Caring role is fairly easy, because some people think that it is easy, they think that the carer does not have to do much at all. This can lead to carers being labelled as lazy. Once a person is targeted as lazy, they do not really want to be labelled as a carer.

Being blamed

This is quite common in the field of psychology/psychiatry, especially in America. When someone is unfortunate enough to develop a mental health problem, all too often psychiatrists tend to probe the family structure. All too often, it says if the carer is not doing their job properly. It might even go so far as to state that the carer is causing the mental health relapse or has caused the mental health problem to manifest itself in the first place.

One of the main criticisms of psychiatry, is at one end it might exclude the carer in their supporting role/care plans or confidentiality and at the other end label the carer as the problem within care plans and assessments. This can lead to a person not really wanting to find the energy battling a mental health system that can misunderstand the caring role.

Confrontational

Another good example of how the mental health system might fail families and carers, is if the carer has experienced failures in support of their loved ones and even the care of them self. It then becomes only a matter of time before the carer becomes more confrontational. No one really wants to be labelled as aggressive, uncooperative and confrontational. This is just another label a person can do without, so why would they want to be labelled as a carer?

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Risk of declining health

Again this might depend upon the type of illness the person is trying to care for, the more chronic the illness, the most stressful situation is for the carer. Since the NHS is under severe strain, a person would have to think hard and long before they would want to commit themselves in becoming an unpaid carer. It is like that there has been a secret contract, stating that the carer now must take the role of the lack of staff within the health system. This could be administering medication, advocating, understanding side effects, understanding social welfare, mental health legal matters, engaging with doctors and also mental health advocate and peer supporters.

Is there any wonder why carers can end up with depression, anxiety, stress and worry? One could say that mental health illness can be catching.

Hiding it all away

I’m afraid I have bad news, for what I have mentioned is only the tip of the iceberg when it comes to Carer stigma. I did not want to make this blog post overly long. With the above issues mentioned, is it any wonder why someone wants to hide themselves from being labelled as a carer?

Recommended Carer books

10 Helpful Hints for Carers: Practical Solutions for Carers Living with People with Dementia – June Andrews, Allan House

A Carer's Chaos - Julie Nancy Wiltshire

10 Helpful Hints for Carers is an easy-to-read guide for carers living with people with dementia. It provides simple, practical solutions to the everyday problems family carers can face when looking after a person with dementia.

A Carer’s Chaos – Julie Nancy Wiltshire

10 Helpful Hints for Carers Practical Solutions for Carers Living with People with Dementia

When Julie Wiltshire’s husband, David, was diagnosed with cancer twice, he faced a series of treatments made all the more difficult by multiple complications. In A Carer’s Chaos, Julie records the details of David’s long journey of cancer treatment, but also offers a unique perspective into life as a carer to a loved one, exploring the love, hate, anger, loneliness and fear experienced on a daily basis by a carer.

A Carer’s Odyssey – Anna Chan

A Carer's Odyssey - Anna Chan

In the first part of A Carer’s Odyssey, Anna Chan describes how she and her husband Jeff were devastated 16 years ago by the diagnosis of their daughter Emma’s severe neurological disorder, called Rett Syndrome.

A Gift for Carers – William Long

A Gift for Carers - William Long

This book was written following the author’s personal struggle with the psychological and physical pressures of caring for his mum. His experiences and research led him to develop a solution which counters the devastating effects of what the medical world refers to as “Caregiver Syndrome.” He identifies seven areas that make for a joyful life.

A Gradual Disappearance – Elizabeth Lonseth

A Gradual Disappearance - Elizabeth Lonseth

“Dementia is like a maze. Its victims get lost in the labyrinth of their own minds, bringing confusion and despair to themselves and to others around them. Families watch helplessly as their loved ones drift further and further away from reality, and when decisions are made, emotions often get in the way of what is really necessary.” – Dr. Sameh Elsanadi, MD Geriatric Psychiatrist

An Introduction to Coping with Depression for Carers – Tony Frais

An Introduction to Coping with Depression for Carers

Looking after a person with depression can often leave carers emotionally and physically exhausted. This short, straightforward and easily understandable guide offers valuable advice on how carers can

BMA Carer’s Manual – British Medical Association

BMA Carer's Manual

Endorsed by the British Medical Association, this is the definitive guide to caring for the elderly or sick, offering practical advice and solutions for everyday concerns such as adapting living space and safe movement and handling. Step-by-step sequences explain essential activities such as helping someone in and out of a chair and special features focus on topics relating to common conditions.

Carer’s Bible – Amanda Waring

Carer's Bible

This accessible and detailed guide includes practical tips, checklists for best practice, descriptions of their experience from a wide range of carers that addresses solutions to common problems, and expert advice on how to deliver compassionate and dignified care to older people.

Caring for a Loved One with an Eating Disorder – Jenny Langley, Janet Treasure, Gill Todd

Caring for a Loved One with an Eating Disorder

Caring for a Loved One with an Eating Disorder: The New Maudsley Skills-Based Training Manual provides a framework for carer skills workshops which can be used by anyone working with these conditions.

Confidence to Care: A Resource for Family Caregivers Providing Alzheimer’s Disease Or Other Dementias Care at Home – Molly Carpenter

Confidence to Care A Resource for Family Caregivers Providing Alzheimer's Disease Or Other Dementias Care at Home

Confidence to Care is the essential handbook for the family caregiver offering practical insights to understanding, managing and preventing the behavioral symptoms associated with dementia and Alzheimer’s disease. Touching, personal stories come together with practical and easy-to-access tips and techniques drawn from decades of caregiving experience by internationally-recognized experts.

Guide to Mental Health for Families and Carers of People with Intellectual Disabilities – Geraldine Holt, Anastasia Gratsa, Nick Bouras

Guide to Mental Health for Families and Carers of People with Intellectual Disabilities

A practical and comprehensive introduction for carers to mental health problems, this accessible guide outlines a range of signs and symptoms of mental health problems that can affect people with intellectual disabilities. The guide explains why mental health problems develop, and advises on what can be done to help people with intellectual disabilities and carers themselves.

Living with Dying: A Complete Guide for Caregivers – Jahnna Beecham, Katie Ortlip

Living with Dying A Complete Guide for Caregivers

  • This easy-to-use guide for caregiving instructs you how to:
  • Have the conversation
  • Navigate the emotional and spiritual journey
  • Control pain
  • Address symptoms
  • Work with hospice
  • Care for yourself
  • Get your loved one’s affairs in order

Mindfulness for Carers: How to Manage the Demands of Caregiving While Finding a Place for Yourself – Cheryl Rezek

Mindfulness for Carers How to Manage the Demands of Caregiving While Finding a Place for Yourself

Carers are particularly vulnerable to feeling stressed, worried and worn down by the vast demands that often come with caregiving, be they physical, psychological or emotional. Mindfulness can be enormously beneficial to carers, whether professional or voluntary, as a means of developing greater inner stability, resilience and gaining more control over their thoughts, feelings and emotions.

No Saints Around Here: A Caregiver’s Days – Susan Allen Toth

No Saints Around Here A Caregiver's Days

When we promise “in sickness and in health,” it may be a mercy that we don’t know exactly what lies ahead. Forcing food on an increasingly recalcitrant spouse. Brushing his teeth. Watching someone you love more than ever slip away day by day. As her husband James’s Parkinson’s disease with eventual dementia began to progress, writer Susan Allen Toth decides she intensely wants to keep her husband at home—the home he designed and loved and lived in for a quarter century—until the end.

Self-Care for Caregivers: A Twelve Step Approach – Pat Samples, Diane Larsen, Marvin Larsen

Self-Care for Caregivers A Twelve Step Approach

For those serving as a caregiver for a loved one, the authors of this down-to-earth, encouraging book can help you make the most of the experience without losing yourself in the process.

Supporting Families and Carers: A Nursing Perspective – Mary E. Braine, Julie Wray

Supporting Families and Carers A Nursing Perspective

Understanding the perspective of carers is an essential aspect of nursing. Supporting Families and Carers: A Nursing Perspective offers insights into the fundamental principles of caring for families and carers irrespective of age, gender, ethnicity, sexuality or religion.

Take Care, Son: The Story of My Dad and his Dementia – Tony Husband

Take Care, Son The Story of My Dad and his Dementia

Hi Dad . . . can we have a chat about your dementia . . . Can you remember how it started?
When Ron Husband started to forget things – dates, names, appointments . . . daft things, important things – it took a while to realise that this was ‘a different form of forgetting’. But it was just the first sign of the illness that gradually took him away from the family he loved.

The Carer’s Handbook: Essential Information and Support for All Those in a Caring Role – Jane Matthews

The Carer's Handbook Essential Information and Support for All Those in a Caring Role

This indispensable guide aims to be a one-stop-shop for the huge percentage of the population who, now or later, find themselves in a caring role, whether that involves shopping for a housebound neighbour, or giving up work to care full-time for a disabled child or confused parent.

The Complete Carer’s Guide – Bridget McCall

The Complete Carer's Guide

There are around six million carers in the UK, a figure estimated to reach nine million by 3037. Being a carer can be rewarding, but it is often stressful and exhausting: it involves a range of tasks, such as providing personal care, managing medication and ensuring that the needs of the person being cared for are met. This practical, much needed guide discusses how to ensure that you have a life of your own while caring, how to make informed decisions and, most importantly, how to access the support and help you need.

The Essential Carer’s Guide – Mary Jordan

The Essential Carer_s Guide

Illustrated with individual case stories, this book covers physical, social, and financial needs, across the stages of immediate, intermediate and advanced care. It is useful as a practical companion for those caring for, or responsible for the care of, an elderly friend or relative.
The Selfish Pigs guide to caring – Hugh Marriot

The Selfish Pigs guide to caring

Over six million people in the UK…provide unpaid care for disabled or elderly relatives, friends or neighbours. Their job is long, lonely and hard, yet there is limited support and no formal training. As a result, carers suffer frequent damage to physical and mental health. Oddly, though carers by definition are anything but selfish pigs, they are liable to feelings of guilt, probably brought on by fatigue and isolation.

Where There is No Psychiatrist: A Mental Health Care Manual – Vikram Patel

Where There is No Psychiatrist A Mental Health Care Manual

Even though mental illnesses are common and cause great suffering in every part of the world, many health workers have a limited understanding about mental health and are less comfortable dealing with mental illness. This book is a practical manual for mental health care for the community health worker, the primary care nurse, the social worker and the primary care doctor, particularly in developing countries.

Young Carers and their Families: Working Together for Children, Young People and Their Families – Saul Becker, Jo Aldridge, Chris Dearden

Young Carers and their Families Working Together for Children, Young People and Their Families

Young carers are children and young people under the age of 18 who provide care for an ill or disabled parent or relative in the community, usually within their own home. They perform many of the same domestic, caring and other duties as adult carers but often without the recognition and support received by many adult carers.