Category Archives: Aimed at Carers

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

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.

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

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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.

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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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.

Networking with fellow carers

FamilyWelcome again to another one of my carer blog posts. On this particular post I am going to talk about networking with carers. When I talk about carers, I am talking about unpaid carers, I am not mentioned care workers who work for a care agency. Care workers are paid and have clients, carers are unpaid and care for someone they are related to or emotionally attached or at least know.

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Why we care – in the family

 

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Welcome back to my first blog post for July, I want to focus this post on why people care in the family or why I think people care due to my own perspective. This blog post will focus on caring in the family. Now I have been a carer for my close relatives for over 16 years and I think I have picked up a few words of wisdom along the way.

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Telling our carers story

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If you are a carer or have been caring for someone for a while. It is important to acknowledge that you have been through some pretty difficult times. Yes, of course there has been some good times, times where carers can celebrate what they have done for those they care for. ┬áThere has also been times when the ‘cared for’ should be congratulated for moving forward with their recovery, however we must admit that there have been things in the past that require special attention.

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