Being There

Being there

Being there because we care
Being there because we dare
Being there to help to with the journey
Being there because of the fear

Being there to because it takes time
Being there to hope your fine
Being there to catch mental illness early
Being there to stand in the firing line

Being there to try to advocate
Being there hoping its not too late
Being there due to all the worry
Being there to avoid the fate

Being there to help to help take the blows
Being there during the highs and the lows
Being there because no one else wants to
Being there because who else..I suppose

Being there because I care
Being there because I dare
Being there to help to share the journey
Being there because of we fear

Embed from Getty Images
Advertisements

Lewisham MH Carer Forum March 2018

133

Here is the March update from another of the forums I chair for Mental Health unpaid carers in Lewisham. The carers forum is based at Carers Lewisham and we are always on the lookout for other carers wanting to become members of our forum.

As with other carer forums. We come together to discuss carer issues, get engagement from our Mental Health trust being South London & Maudsley and also get engagement/focus groups from other parties. It is not unknown that members from other trusts tend to pop down to observe or engage with the forum for networking purposes.

For March, the group discussed a vital important question relating to SLaM’s recent quality improvement project. The forum was asked the following question.

What’s the most important thing that SLaM could do to improve the quality of their services?

With a good turn out, I presented why carer forums need to examine its Local mental health trusts quality of services and what as a forum we can do about it.

With support from Ulalee (Carers Lewisham, carers advocate and representative). The group fed back the following.

  • Some members feel it takes too long to engage with the patient and their carers and family.

This might be due to lack of staff or miscommunication, I do not have the answers, but in the past there was more engagement with patient and carer, now many seem to feel engagement tends to happen mostly when medication is prescribed.

  • Need more interpreters to help in engagement/dialogue with mental health services.

One of our members does have difficult with English and is currently getting help from Carers Lewisham in their situation, but feels interpretation could be useful in the service.

  • Access to information when a serious incident takes place regarding families and carers (inpatient).

Some members feel confidentiality is getting in the way too much, although they do understand there is a need for it.  A member is querying why there is a lack of confidentiality booklets and why it is taking so long to print more out, however they are happy with the content of the booklets.

  • Follow up regarding the event, should be improved.

Some members hear too many stories from other carers that their ‘loved one’ is back on the ward, they do understand that the service user may have wished not to take medication, but members feel follow up after a mental health crisis is poor and the quality of follow up services should improve.

  • Improvement in medications (what the medication is meant to do “information about medication”)

Not only should there be improvement in the quality of medications, but information about medication side effects should be provided.  I have been on some wards and community treatment bases and have seen medication leaflets placed around, but members feel there should also be monitoring and discussion with the patient and carer on how medication is getting along.

  • Training of staff should improve in quality (mental health to avoid misdiagnoses)

There is a feeling the reason why so many patients end up back on the ward is because monitoring of medication is lacking, so patients come off medication due to side effects and sometimes the medication might not be working at all.  The forum members feel perhaps training staff might help.

  • Engagement to the community in regards of how families and carers can access training

Staff should be trained not only on ward engagement, but engaging with family and carers in the community.

  • Lack of social workers, need more to help improve quality of services.

It was noted that some areas under SLaM are affected more, but it is felt this was not SLaMs fault, but there is still a need for more social works and less burden on SLaM staff to end up documenting procedures/reports all the time.  Members feel the spirit of psychology/psychiatry is becoming too clerical and engagement has gone out the window.

  • Long waits for therapy / GPs should be more informed.

The gatekeepers to SLaM services e.g. GPs should be more informed about how family and carers (mainly those supporting mental health needs) can get help.  The forum also requires engagement from the CCG on such matters and wish the CCG and SLaM work in partnership on carer awareness among Lewisham GP surguries.

  • Providing better quality of support information & communication to Patient and Family/carer

Members feel more communication with patient/carer could improve, but we are not sure how this could be done.

  • Dignity and respect to family / carer

Members of the forum are hearing stories and experiences of mental health staff becoming aggressive towards patient or carer.  Many members feel perhaps work pressure, bad relationship and lack of training could be causing this.  Family & Carers and patient deserve dignity and respect since trauma can be catching.

  • Carers not involved regarding Admissions, revolving door of mental health service.

It could be confidentiality problems again, the forum does not know, but we feel family and carers are not always involved in ward rounds with the patient and would like to hear from social services department or those responsible for social services at the trust.

  • Explain to family/carer why the ‘cared for’ as been admitted (preventative measures)

Too many stories and experiences of loved ones being admitted time and time again to the Ladywell Unit, feel their is a blame game on the patient refusing treatment.  Members think their certainly should be a trust responsibility as well.  Members want some improvement on why their ‘loved one’ is being admitted time and time again.

  • Also to keep the patient out of the ward (discharge plan)

Members feel the follow-up is lacking, a bad discharge plan increases the likelihood of the patient being admitted again.  Members feel information from SLaM’s patient database is obscure, something is wrong when patient/carer is not getting all information from the database.  The forum wants engagement for representatives of EPJS to explain what work needs to be done on the patient system and why it is so hard for patient/carer to be sent information regarding ‘care plans/emergency plans/carer engagement info’ and so on.

  • Should work to improve quality of communication to family/carer and also patient.

Too many stories of care plans not containing information or information not making sense.  Members of the forum understand there is pressure on staff to document reports, but still want quality to improve.

  • Have experienced carer not knowing what to do, it should also be a trust responsibility.

More of a problem for new carers, but it can be difficult getting hold of mental health staff, which is why support from Carers Lewisham has been so critical.  With the loss of SLaM’s carer support officers and also the loss of Carers Lewisham Mental Health advocate; family and carers are feeling the brunt of service cuts as it is hard to know who to go to for Mental Health carer requirements.

The forum members look forward from carer leads out in the community and would want to hear updates of SLaM carer lead network meetings.

Lewisham BME Mental Health Carer/SU Forum March Update 2018

Welcome to the March update of the Lewisham Mental Health Carer forum. This forum is filled with unpaid carers supporting someone close suffering mental health needs. We come together each month to discuss issues, work out what is working for Carers and service users agmonst the BME community and be engaged by our local mental health trust, CCG and third party providers.

This month we had the Clinical Service Lead for Assessment and Liaison based in Lewisham. He spoke about the kinds of services provided for lewisham resisdents who have mental health needs. We also discussed the use of Increasing Access to Psychology Therapies and how to access such a service.

The discussion moved onto why BME groups were not accessing such services and if there were thoughts and ideas of how mental health staff treat BME service users and their carers. Group members felt because of bad experiences, even young BME groups tend to stay away from services due to fear of trauma. The group queried how many people were being assessed in the borough of Lewisham, but I reminded that we need to examine the report “Meeting the public sector equality duty at SLaM”.

Some of the members would like to have the Patient & Public Involvement Lead for the Acute ward services back again to talk about further updates about the Acute ward services.

IMG_20180323_111237

More discussions were focused on the services provided at Southbrook road and the BME Service user/carer forum were handed out updates from the meeting in Feburary. The group were very pleased in how the report was laid out and presented and would like such a format to continue.

A large part of the discussion at the March forum centered on experiences with the police and how some members ended up at the Ladywell Unit. There is distrust from some members of the forum about the police, especially due to the recent death of a mentally unwell person brought in by the police. I however reminded the group, that engagement from SLaM’s Central place of Safety and the police mental health lead would help shape views and experiences. The forum looks forward to engagement from Lewisham Police & SLaM in the comming months.

Some of the members discussed the need for therapy/counselling and felt it was lacking in SLaM, they felt the need for such services due to trauma and bad experiences. Members of the forum were not interested in family therapy all the time and would want some counselling and engagement on how to understand their care plans.

Southwark MH Carers Forum March 2018

Untitled-2Welcome to an update of how the March 2018 Mental Health carer forum went. I usually try to chair several carer forums around South London and on Friday the 23rd of March we had a forum at Southwark Carers. As stated in previous posts, one of the core aspects of the carer forums is to give carers the space, platform and voice for engagement at their local mental health trust.

Fortunately the forums are very much supported by our mental health trust and at this particular forum we had engagement from the Southwark Modern Matron for South London & Maudsley. Matron’s used to be used very much earlier on in the NHS history and now South London & Maudsley are bringing them back to help with quality standards, engagement with wards and a whole lot more.

South London & Maudsley NHS Foundation Trust has 4 Modern Matron’s each one for the four boroughs the trust provides services in. For Southwark the Modern Matron focuses on Physical Health, Lambeth is on reduction in violence on wards, Lewisham focuses Quality improvement and Croydon on Learning disabilities and Carer engagement. As a note all 4 do a whole lot more, but these are some of the core aspects the matron’s work on.

Maudsley-main

Zara the Modern Matron for Southwark spoke about how important it is to build relationships with the staff on the Acute wards. She spoke how she trained for the role and her passion to make a big difference. As a carer, I was very interested in what she had to say and her way of speaking made me even more interested in mental health overall. The modern matron for the borough of southwark also spoke about how care plans will hopefully be more of the focus in ward rounds held at the 4 hospitals. She spent a large time engaging with carers at the forum about SLaM’s “Carer engagement & observation plan” and changing the culture of how NHS staff can engagement and involve carers.

IMG_20180323_162441

Lots of big projects are happening with Maudsley working with the two other big Mental Health NHS trusts that being Oxleas and the other being South West London & St Georges. We also heard about the importance of the 5 year physical plan from SLaM looking at

– Stoping smoking
– Smear tests
– Denistry
– Nutrianal health and more

One of the reasons for the 5 year plan is that patients with mental health needs often tend not to focus on their own physical health needs and the NHS trust feels that mental and physical health should be the focus in health and recovery.

Other parts of the forum is that the borough of Southwark’s MPs have responded and will have time to engage with the forum, we are still waiting to hear from the last MP. The other good news is that the mental health lead for Southwark CCG will visit the forum in the coming months. So far, I am very impressed with the support the forum is getting from the borough of Southwark, but unfortunately there still is a lot of work to do in order to bring changes for families and carers.

The last part of the forum was exploring the following question regarding improving services for SLaM. I wanted to collect information from carers on how they feel South London & Maudsley could improve the quality of it services.

Hopefully we can get more carers attending the forum, but if not that then at least they can have an option to try attend a carers support group, which we hope will be set up to catch hidden carers or those who feel their role is not about caring.

Thanks for reading.

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.

Embed from Getty Images

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.

Embed from Getty Images

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.

Embed from Getty Images

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.

Embed from Getty Images
  • 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

The book you should be reading this month

my face plus book‘Please Hear What I’m Not Saying’ is a poetry anthology featuring 116 poets, all writing about mental health. The profits from this book go to UK Charity, Mind.

Editor Isabelle Kenyon compiled the anthology following an international submission call out. Contributors were enthused by a common goal to raise money for the charity, Mind.

With poems focusing on mental health from a wide range of experiences (covering topics such as grief, trauma, anxiety, poverty, Alzheimer’s and therapy), the book aims to continue the worldwide conversation about mental health.

contents

Isabelle comments: ‘As an editor, I have not been afraid to shy away from the ugly or the abstract, but I believe that the anthology as a whole is a journey – with each section the perspective changes. I hope that the end of the book reflects the ‘light at the end of the tunnel’ for mental health and that the outcome of these last sections express positivity and hope.’’

You can buy the book on Amazon here: Please Here What I am Not Saying

Reader Photos

And more information about the project here: https://www.flyonthewallpoetry.co.uk/mind-poetry-project

Mind Anthology