Category Archives: Aimed at Carers

Blog posts aimed at non paid carers caring for someone unwell.

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”.

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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. Care workers are paid to provide care to numerous clients. Unpaid carers provide care to those close to them.

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Carer aiding her mother

Someone can become an unpaid carer for many different reasons. Unfortunately one of the reasons might not be out of choice. Considering the difficult role of unpaid carers, not many would want to rush into such a role. This is because there is a fear of the future, unpaid carers begin to wonder the following.

  • How their loved one will be supported.
  • How the carer themselves will be supported.
  • What happens if things go wrong.
  • Taking the unfortunate step to complain.
  • Wondering what would happen if they cannot care anymore.
  • Wondering what would happen if they loved one dies or moves on.
  • Wondering how they are going to cope if benefits are cut.

These are all serious issues and oh no laughing matter. If you have been an unpaid carer for as long as I have which is properly 20 years +. Think of the outcomes.

  • Has the lives of unpaid carers continued to improve over the past several decades?
  • Has services across the country decreased putting pressure on other services and unpaid carers?
  • Has funding increased for Carers Centres?
  • Has austerity improved the lives of families and carers across the country?
  • Has the number of carers increased across the country?

The statistics

Every year around 2 million people will take the unfortunate step to become a carer. Some carers will have to give up work to continue caring for a loved one, while other carers do not want to risk getting support from the benefit system. Like myself 3 million carers juggle work with a caring responsibility. Do not believe government’s being that all carers do not work. Plus caring is in a job itself, a very difficult job considering the outcomes I have mentioned earlier on.

Family

Group of people together holding hands

Do not get me wrong being a carer can be a rewarding job, but remember look at the outcomes. My aim is not to put you off in being a carer, but to remind you of your rights. I aim to remind you of your carer rights.

If you are an unpaid carer like myself. It is your right to speak up and tell it as it is. You as a carer should not feel ashamed if you have felt hard done by. Think of the outcomes if you feel that your loved ones life is ebbing away before your eyes. What is the risk? What is the cause? Who is to blame?

Never before has it been so important that carers are aware of their rights. It is so unfortunate that the care act 2014 can still seem so complex.

Carers rights.

Just as a note this is not an exhaustive list, but what is mentioned here are a set of important factors in the carers role. If you are an unpaid carer please consider what I have mentioned below.

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  • As a carer it is your right to get help with benefits and also get support to sustain your income.
  • As a carer it is your right to get support for therapy and counselling.
  • It is your right to get a carer’s assessment especially if you ask for a carer’s assessment.
  • As a carer you have the right to be fearful for the future, you have the right to ask for information.
  • If you are a mental health carer, the information you may ask for might give better outcomes for the person you are caring for.
  • As a carer you have the right to access advocacy, so in order to steer the ever-increasing maze of the health and social care system.
  • As a carer you have the right two access courses to aid in caring and learning about confidentiality in the Caring role.
  • As a carer you have to write to be supported with advanced directives, deputyships and power of attorney.

Final word

There are many reasons why carers across the country have a hard time. The thing is, carers can appreciate the awareness days, carers can appreciate strategies and policies set by carers organisations. Carers can appreciate the hard work the NHS does on behalf of their loved ones. Yet, if carers want real change, carers will have to lead from the front. Carers will have to implement a culture change. We must hear the carers voices. It is not just about organisation speaking on behalf of carers, carers must be given the power to speak for themselves and implement change.

Comforting friend. Woman consoling her sad friend.

Carer supporting loved one in Mental Health distress

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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?

Promoting your voice as a carer

insert_edited-1Hello, welcome to my latest blog. This particular blog is aimed at carers. This post hopes to be an inspirational message for anyone who is caring for a family friend or even a neighbour.

This post looks at promoting your voice as a carer. As a carer by our role, we give up so much and sometimes expect little, by definition health services and sometimes social services are aimed at the patient. Policies and laws can often assume that the family and carer are strong enough to cope by themselves.

Still, think about all the hard work energy and love you provide in caring for your loved one. No one else can tell you how to do your job, although they can provide some insight and maybe some support. So it is quite important that you use your voice as a carer to let others know how important you are in regards to services and policies.

Its all about Carer’s Voices

The risk is far too great if a carer does not speak out. Not only is the patient’s life or quality of life is at risk, but also the carer can suffer declining quality of life. When carers get desperate, they begin to risk so much and sacrifice so much such as time and energy. It is vital that you as a carer speak up, network and engage.

Silhouette of man showing his hand on sunset sky background, Successful business concept.

I am not only just asking you to speak up because your welfare depends on it. I am asking you to promote your voice because you should be valued as a carer. Just because you are a carer, does not mean that you should be ashamed to be a carer. Carers should be championed and valued for the things that they do for the family. If the community can learn from carers then we have a caring community.

Considering carers are unpaid, this is the least that carers can deserve. We should be encouraged to promote our voices, be it at events, forums, carer support groups, meetings and consultations. Carers should try to get out there and make a difference. Remember no one can tell you how to do your role, however they can advise.

Your caring experience is your own

Just as no one can fully tell you what to do, no one can fully understand what you are going through. No one can wear your shoes as you walk that difficult path in support in your loved ones journey through the health system. The emotional and physical turmoil a carer can go through cannot be fully understood, so it is vitally important that as a carer you speak out and get your voice promoted.

Sometimes as a carer we can be impatient and want change to happen straight away, but we must be practical considering the harsh changes is going through the NHS and social welfare system. Constant turnover of NHS staff can listen resources and support for carers. We need to realise that Rome was not built in a day. As carers we seek engagement, involvement and empowerment. Most carers will try their hardest not to harass and hassle those responsible for services, but unfortunately at the same time we do not want things to drag on and carers welfare is not Limitless.

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What services need to try and do regarding carers

I will make this as brief as possible, i’ll make this as gentle as possible. As carers, we want services to celebrate us. We do not want services to be scared of hearing carers voices. We want services to involve a so much that it seems like we are part of the team. Services should try to seek carers views. Services should try to engage with carers and invite them to service provision changes.

As carers we do not want services to keep referring carers on, we do not want services to keep passing the buck. We do not want services to be embarrassed of carers or afraid of carers.

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Due to these difficult times, as carers we must recognise that caring is just not enough. We must push our voices for more care support and work with those to get more better or creative services that help in the Caring role.

Learning from each other

As a carer please be interested in what the NHS is doing for you and the person you care for. Do not assume that the NHS is the expert in family and community care. We must all work together to enhance health and wellbeing in the family and in the community and eventually in Society.

Remember as a carer you deserve to be valued and championed, it is all about community and bringing out the best in ourselves. So think about using your voice as a carer to get your voice promoted.

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Holding MH Trusts to account via carer forums

2000px-NHS-Logo.svgWhat Carer forums need to take note of

Welcome back to my mental health blogsite. Most of the time I write about Unpaid Carers who support someone close requesting mental health needs or are suffering from mental illness. On this blog I am going to write about why Carer forums need to take note of what their local mental health trust is doing.

Quite a few mental health trusts do amazing work regarding patient care, but there should be a place where carers can get together with the trust and raise concerns. We all know the mental health service is struggling as of present and this can affect service users and their families.

Meeting Of Support Group

Just as a reminder, not all carer groups are the same. You can have a carer support group, where carers get to tell their story in a safe closed space. We can also have a forum where time is put into presentations, discussions and agendas. Lastly some carer groups have a mixed of presentations and carer stories where carer seek emotional support, some carer groups act as information hubs where peer supports or MH staff aide carers on how to get support.

Most of the issues below are usually covered in a Carer forum, where there is little or no time for carer stories and more time is spent on understanding why certain Trust problems are occuring.

  • Delays in providing the treatment.

Out of all the issues listed, this would be the most common that affects carers and those they seek to support. If the patient cannot get any treatment or support, then most if not all the support falls onto the family or carer who all too often will lack the skills to provide the treatment.

  1. Such treatment could be a bed/room to stay while recovering from a mental health crisis.
  2. Access to medication e.g. antipsychotics
  3. Access to psycho-therapy
  4. Information about their mental health and so on..

Delays usually occur if there are no beds, but even then the trust may not be fully at fault as GPs can often misdiagnose a mental health need. Lack of mental health staff can lead to delays as no one is available to provide a mental health assessment, which can often end up with the police stepping in wondering what to do. Within a Carer forum, carers should query with the mental health trust if there are any delays regarding treatment and query reports on how many patients have been seen at the trust.

  • Failure to provide appropriate medication.

Again, This is one of the most common issues that can affect the patient and carer. Medication is usually one of the core aspects of mental health treatment. Wrong medication can often cause the patient to deteriorate even further. What is even worse is if no medication is provided. Often the patient can refuse medication, it is their right, but due to mental health laws or MH Trust policies (we ll come to this later) there could be high levels of failures in providing medication.

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Without medication, service users can relaspe causing distress with family, friend and carer. Serious Incident levels begin to rise and Carer forums should query who is responsible for monitoring medication incidents.

  • Lack of referring patient or carer

This problem is not only common to mental health trusts, but also partner organisations. GP surgeries, Advice bureaus and even hospitals can fail here. Failure to refer patient or carer for support can leave both in isolation and desperation. Carer forums should not only query patient/carer leaflets, but also if there are a lack of carer information leaflets/booklets or why information has not been produced in a document.

  • Family/friend, GP or advocates ignored.

Going through past serious incidents, if you look back far enough you will find someone had been constantly ignored. Oddly enough even the gatekeepers to mental health services can be ignored. Carers can try to raise an issue with mental health professionals that their loved one is experiencing a crisis and needs to be assessed. Carers would either phone, email, write a letter or speak face to face with Mental Health Staff, but if nothing is done and a serious incident arises then it should be queried.

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Carer forums should have an interest to query if members of the forum have experienced this and if the trust produces reports regarding such issues. Maybe a Mental Health trust have a policy to tackle carer/patient requests. Carer forums should certainly discuss developments regarding the trusts patient database system and ask for database queries.

  • Insufficient or poor risk assessments

A poor risk assessment can certainly lead to incidents as mental health problems can go misdiagnosed. This leads to carers having to struggle supporting their ‘cared for’ in a crisis for longer amount of time. The problem is risk assessments are notoriously difficult to measure or even regulate. Members of the Carer forum should not only query how a risk assessment is done, but ask for reports on the number of assessments carried out and who at the trust are task with doing them.

  • Insufficient or lack of training

Lack of training can lead to all of the problems raised so far in this blog and even more. A mental health trust has a duty to continually train its staff, not only to help the patient but improve the quality of its staff. Mental Health staff should be patient and Carer aware. Carer forums should make a lot of noise if they continually hear stories of staff who do not understand what a carer is. I myself am fortunate to be included in helping to train staff at South London & Maudsley about families and carers, but there are some trusts that may not even provide training about carers or might not involve carers in their service.

Carer forums should ask for engagement from a trusts Staff training forum. Carer forums should have members who are active in training mental health staff and there should be involvement protocols to allow carers to be involved at the trust.

  • Confidentiality Issues

One of the biggest issues regarding carer and patient. I have been to many carer forums talking about the good and bad aspects of confidentiality. I have also been making a lot of noise about confidentiality, which I am sure has annoyed mental health professionals.

Why is this?

If carer is continually blocked on asking how their ‘loved one’ is coping or being involved at meetings, it might boil down to patient confidentiality, sometimes the patient will not want the carer involved, but it is a lot more tricky than that. Mental Health trusts have the duty to help the patient understand why the carer would want to be involved unless it is a safe guarding issue. Unfortunately confidentiality can be used as an excuse to avoid dialogue with the family or carer. Lack of confidentiality policies or booklets can cause confusion with staff and carer not knowing what to do.

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Carer forums should task themselves with who is responsible for confidentiality policies/booklets. Family and carers should also be involved in training staff about confidentiality.

  • Issues around discharge.

Due to bed management, patient discharge can happen too soon and sometimes might not happen at all. Some patients might be discharged because a bed is needed or a patient might be discharged because there has been a misdiagnoses of their MH needs. Discharge to a carer is risky if the carer is not prepared, informed or involved.

A carer forum should query a trust’s discharge pathway and seek engagement from the mental health trusts Quality improvement team.

  • Lack of appropriate care or continuity of care.

Another difficult issue to monitor or assess. Sometimes a mental health carer forum can pick up stories where carers are complaining that their ‘loved one’ is not getting any community care. It is vital a carer forum raises such stories to the trust otherwise families or carers may find themselves becoming the mental health team and being told to just “get on with it”.

  • Problems with protocols or policies.

Mental Health trusts can be pulled and pushed in all sorts of directions. Such problems can cause a trust not to update protocols and policies. If protocols and policies are not followed, then incidents can arise from them. Carer forums should ask for a list of policies related to carers (Expect the number to be large).

  • Patient was without care plan or the care plan in place was inadequate.

Difficult to measure due to confidentiality, but reports should be processed on the number of care plans done. Carer forums should most definitely be consulted with the CQC (care Quality Commission) who monitors and inspects health services. A patient without a care plan can often cause the carer to not know their role and this can lead to a lack of patient recovery.

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  • Poor communications between agencies and/or staff.

This is often a culture problem and unfortunately a carer forum may have to poke their nose into what the local council is doing. Healthwatch should be able to help the carer forum engage with other agencies, but if there continues to be poor communication between agencies then a number of health problems will not be picked up or delayed.

  • Poor communications with the patient or his or her family.

This might also boil down to confidentiality, but quite a lot of issues can be down to training, misinterpretation, lack of time or difficultly in building relationships. Issues of trust can also cause an issue here. Carer forums should keep an eye open if poor communication is happening at their local mental health trust.

  • Poor record-keeping.

The CQC can come down hard on mental health trusts on this issue. Mental Health trusts have been fined large sums for poor record keeping. If a patient has no record or is not past information required to their care, then the quality of care can go downhill.

  • Staff shortages or a lack of funding, available facility or available beds.

It has been unfortunate that Trusts have an appetite for Bank Staff or temporary MH staff. There are policies that have come into place to reduce reliance on Bank staff, but due to pay issues it has been known for staff to move into the field of becoming temporary since it pays more. Care forums should query if the trust is spending vast sums of money on bank staff, because without a doubt other MH services will suffer funding shortages and skilled professions.

  • Cover ups

Very difficult to tackle and this might be down to serious incidents being confidential. Mental Health trusts do not like being investigated or being fined, no one likes their reputation damaged. Unfortunately families and carers cannot sit around and have a MH trust culture to become silent. MP’s, councilors, Trust governors and other agencies can aide Carer forums if something is not right with the trust. To make matters worse there can even be collusion as everyone is trying to save money.

No one is usually in a rush to highlight cover ups, but if they are not tackled then every one suffers. There are usually signs when something is not right or investigations are taking too long.

  • Poor excuses

Ever heard of the term “Lessons learned?”. I will perhaps create a blog to poor excuses. If a trust fails to provide care to a large number of patients repeatedly then a carer forum should have space to work out why this keeps happening.

Carer forums and members of the trust should be engaged at trust events and space given to query what the trust actually have learnt from successes of failures.

The issues listed are very basic and some items have been missed due to lack of time. I can only hope whoever is reading has the strength, time and conviction to engage with their carer forum if one has been set up around their mental health trust.

Thanks for 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.

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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’?

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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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Why you care

Mother comforts her teen daughterIf you are a non paid carer of someone suffering from mental illness, there will be times that you question yourself on why you care. Especially during the toughest part of a crisis. It might be that you constantly fear loosing that person through an eating disorder, addiction or psychotic episode. It may be that you are having difficultly getting your point across to mental health professionals especially when the NHS is in its time of crisis.

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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.