Tag Archives: carers lewisham

Lewisham MH Carers forum June 2018 update

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Here is the June 2018 update for the Lewisham mental health carers forum. We had a visit from the involvement lead for Croydon and Lewisham. With support from south London and Maudsley NHS trust, the purpose of this forum is to see who will engage with the forum throughout the year and beyond.

 

The Forum looks forward to the Deputy Director of the Crisis Services Psychological Medicine Management lead attending the forum in July. Members of the forum were also pleased to hear that in future in Lewisham Execitive would also drop by to explain about service updates and engage with the members.

We were also pleased to hear that a lead from the “Centre for Anxiety disorders and Trauma” would engage with the forum in October.

In regards to Triangle of care policy launched for NHS trusts, no new applications are taking place for Trusts to join. We hope that in September there will be a review and an update regarding applications to join the policy.

traingle-of-care

Last month the forum members were interested in the staffing structure at the NHS Trust particularly in Lewisham. Due to the recent structure changes the NHS Trust will update the forum once job posts have been filled.

Members of the forum also wanted a carers handbook to be placed at GP surgeries across the borough of Lewisham, however due to funding issues this cannot be possible although Lewisham CCG have kindly put information about carers in the GPS newsletter.

After the discussion with the involvement lead carers had a group discussion regarding problems carers are currently facing. We discussed the following issues:-

1. GP not always understanding carers in regards to the ‘cared for’ being referred to services.
2. The lack of respite and breaks for carers.
3. The lack of emergency respite.
4. The lack of carer activities.
5. Limited education on carers rights.

Members of the forum were wondering what on earth happened to the borough of Lewisham carers strategy considering other boroughs have their own carers strategy.

Lastly members were very pleased with the involvement lead working so hard to support the forum. We hope to hear from the lead soon.

This concludes the update for the June 2018 Lewisham mental health carers forum.

 

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Lewisham MH Carer Forum March 2018

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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.

Carers Lewisham AGM 2014 Review

Matthew MckenzieWelcome back to another of my blog posts. If you do not know already, I tend to blog about caring, especially caring for those suffering mental ill health, if I am not blogging about caring, then I review events on psychiatry, psychology or sociology, if not reviewing events, I help on mental health promotion and also review the odd audio lecture.

 

 

However this particular blog post is about the Carer’s Lewisham Annual General Meeting. This AGM took place on the 7th of November 2014 over at the Methodist Hall church in Albion Way.

Methodist Hall church

The Carers Lewisham AGM was about the recent developments Carers Lewisham have been up to, plus a chance to hear from 5 carers talking about their journeys as carers and how Carers Lewisham has helped them.

Before I continue, what exactly is Carers Lewisham? What do they do? Here is one of their videos about Philip the young carers advocate.

Now continuing about what Carers Lewisham does.  Taken from their site. Carers Lewisham supports Carers in the London Borough of Lewisham from aged 5 upwards. They provide a range of services including advice, information, emotional support, breaks, opportunities to meet other carers, time out from caring activities such as relaxation days and well being sessions; coping strategies, specialist support for parent carers, carers of people with dementia, carers of people with mental health problems, older carers and carers who are caring for someone who is nearing the end of their life.

So you see Carers Lewisham does a lot for carers and as a carer myself, all this help is appreciated, considering that us carers are often unappreciated at times. I was so pleased with all the support Carers Lewisham has given me over the years, I was more than happy to be one of the 5 carers to do a talk at their AGM.

I will not go into too much over the Carers Lewisham AGM, but what tends to happen there? Well basically we get the minutes from the previous year’s AGM. We then got to ask questions on any matter’s arising. Members are provided with the previous years Annual Report and Audited Accounts from the previous year and we get to hear any other business.

It has been a difficult year due many cuts in services and I am sure a lot of other charities are facing similar difficulties, so Carers Lewisham was no exception. I know they have been working very hard on behalf of carers like myself who also face a tough time almost trying to survive.

However from the past year, Carers Lewisham have still been very busy and have done several outstanding Achievements. They have gained the ‘Center of Excellence Award’ from Carers Trust. Carers Lewisham have also developed their social media communications and their Ebay shop is going strong. Plus they have supported hundred’s more carers and saved carers thousands of pounds of legal fees by helping them with Power of Attorney’ forms.

Carers Lewisham have done all this and more. You might have noticed I often blog about other carer centers, but being since I am from the London Borough of Lewisham, I ll always have Carers Lewisham close to my heart.

After the AGM was finished, the guests and members at the Methodist Hall Church got to hear from 5 carers stories about their journey. I felt so privileged to tell my story and journey, I felt the day was quite special to me, even though deep down my heart aches with sorrow for who I look after.

Matthew Mckenzie

Every carer who spoke at the AGM about their journey struggled to hold back their emotions, all the 5 carers let the audience know how much their caring role has affected them and how Carers Lewisham has sort to get them through a difficult and challenging role.

Another carer story told was from Kevin Wheelan who told the audience about who he is looking after and how difficult the journey was for himself. Kevin has been active with many organisations and groups. I could say that Kevin is a great spokesperson for carers.

Kevin

Overall I felt the AGM went rather well and it was with sad regret to hear the CEO of Carers Lewisham Diana Jones is to leave the charity after some months. The reason why? She is compelled to care for her close relatives.

Diana Jones

I have known Diana many years and from what I have seen and will remember of her is that smile and putting carers close to her heart.

Here is a video below with some hints and tips from Diana.

Going back to my story, I said the usual things about my journey, but if I have not thanked all the staff at carers Lewisham then I do apologize, I have special thanks for Jey Siva who has helped me through the most difficult periods of my life.

Jey Siva

Jey has attended meetings with me and advocated on my behalf, even outside her working hours. You could say both Jey and myself have walk the journey together.

Who knows what the future may bring on our caring journeys, but one thing will always remain is that I will never forget the great support Carers Lewisham has provided for myself.

Here’s to the great memories and adventures to come.

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Connecting with other Carers

Matthew Mckenzie

Hello again everyone and thank you for stopping by to check out my blog on caring and mental health.  As a reminder this blog is mostly about carers who care for those suffering mental health problems. There are still many parts of the site that is under development and when I am not often blogging, I am bound to be out and about trying to raise awareness or engaging with those interested in the carers world or mental health.

My background is that I am a carer for my mother and have been a carer for around 13 years or more. Sometimes my mother is well enough to look after herself, but unfortunately there are times when I have to step in, especially when I am not requested to do so, its practically like a leap of faith how things will turn out.

When things go wrong within my caring role, that’s when I figure on working out who to turn to or where I can get any support. As a carer you cannot just go anywhere to look for support. You would have to find someone or something specific.

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Usually a carers centre is a good idea to get any support, usually most London boroughs have a carers centre. I am over in Lewisham, so my carers centre would be Carers Lewisham, for others in South London it could be Southwark Carers , or Carers’ Hub Lambeth  or even Mind in Croydon.

Why go to a Carers Centre?

There are several reasons, but the first would be getting advice and information, which I would rank very high for carers like myself. The next being emotional support and a chance to meet other carers, although carer centres offer a lot more than I have mentioned. You can always look one up and check out what they provide.

There are many other carers centre’s and they all offer carers just the thing they need in order to cope as a carer, get information and just a place to hang out.

I have popped over to Southwark Carers, Mind in Croydon and plan to check out the Lambeth Carers hub forum next week, which is on Thursday the 10th of July.

So ok, one of the things I like to do at a carers centre is speaking to other carers, but why? Well again there are several reasons and to make a long story far shorter, I ll list them out below.

– Learning from other carers
– Speaking to carers who come from similar environments
– Feeling I belong somewhere
– Answering their questions
– Having someone to listen to me
– Being another carer who listens to carers stories
– Having some confidential space

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Let me just elaborate on a few of these reasons, just to give some people an idea of why such activities are so important for me as a mental health carer.

– Learning from other carers

When I first found out I was taking the first steps of my 1000 step journey as a carer, I just did not have much of a clue of what I was doing. Yes, I was given advice, but at that time I could not digest such information, I was suffering and I felt so distant from people.

Eventually I decided to go down to my local carers centre after phoning them up. The carers centre staff was so understanding and I just needed someone to talk to.

After a while I felt more at ease in talking at the carers centre, but it soon dawned upon me that other carers had been through the same journey, they were listening to my story and offering some comfort and advice. To be honest, these carers were almost putting up signposts on my Journey along road, which I could follow.

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I never did set out to learn from other carers, but this is something that sunk in each time I spent the time with those who have shared my journey.

– Speaking to carers who come from similar environments

Speaking to carers is fine, but remember there are many different types of carers out there and one day I hope to do a blog post about such carer roles, but lets say you are a carer caring for someone who has dementia, or you are a young carer, or a mental health carer? What then?

You may want to learn even more by speaking to carers who are caring in your field. Usually carer centre’s have drop in groups for carers of different fields. I always advise you check them out when you can, as a carer you can learn even more from such specialist groups. You just get that extra relation factor, if you know what I mean.

Feeling I belong somewhere

There are times when a carers journey is lonely, be it at home, the workplace, heck! even in society. Carers can be ISOLATED. I am not lying, caring is something almost done for free, because we carers cannot bear to see our loved ones suffer, but so many expect us to do this for nothing and yet it benefits society. We all want caring communities right?

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Ok! ok! enough of the rant, again I sometimes drop off to carers groups or carers centre’s. This is because I may feel that I cannot get out and speak to someone about my problems. Even once a month is good, never feel you have to cope on your own as a carer. It is so easy for carers to suffer from stigma, that being carers feeling embarrassed by caring for someone suffering from devastating illnesses.

– Answering their questions

After spending some time on my journey as a carer, I began to get just a bit more confident about my role. I knew the road was straightening out. I could see the signs and signals, I could read the directions. Then on my path I met other carers, they shared their story with me and I listened to them. I felt I could almost relate to them and understand fellow carers.

It was not long before carers kept asking me “What do I do?”. At first I was silent, because I did not want to give bad advice, but eventually I told them what I would do if I was in their position. Of course its always better for a carer to seek professional advice, but then sometimes a carer will ask another carer for information, perhaps its human nature.

We all want reassurance, we all seek others on the same path as we are and who could give us advice, hints or tips.

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I hope I am answering some questions with this blog, I just hope this blog is a map for other carers who find themselves on a similar journey. All I ask for such carers is whatever you have learnt, feel free to share with other new carers, but do not judge them. We are all on a unique path for our Journey.

– Having someone to listen to me

As a carer for so many years, there are times when I just want to let it all out. The frustration, the anger and fear.  The Regret, worry and concerns. Its bad, so bad to keep it all inside. I just want someone to listen to me. I am sure if you are a carer reading this, do you not feel the same at times?

There are times when people speak to me and I cannot get a word in, other people know it all and perhaps they do know it all, but what about the problems that can never be solved? What if your world is falling apart? Time is drifting away from our loved ones and us carers have got to let our emotions out somehow.

The good news is at carers centre’s they usually have counselling sessions, please take advantage of them.

I used to have counselling for myself and some of it worked, it might not be for everyone though, but to have someone listen to you without judging can do you a world of good.

– Being another carer who listens to carers stories

I talk and write nearly all the time, sometimes I feel as if its therapy where I let my own emotions mark the page and also share the wisdom from my mind.

However there are other ways to heal and one of the best ways is just being there. As the saying goes “If you cant with the one you love, then love the one your with”, was that not a verse from a song?

I guess you know what I am getting at, there are times when you are healing another carer just by acknowledging them, by listening to their story. I have been on carer groups run by a mental health trust being “South London & Maudsley“, at times their carer groups offer an excellent session of healing. We listen to other carers and acknowledge them, as we learn from other carers, we learn about ourselves.

– Having some confidential space

There are times where you want to get away from caring. You ARE you!!

Its not like you were born as a carer, even though you may have taken on such a role.

We all need some space and to care almost 24 hours without having such a space is asking for disaster. The time to get such space can be again at a carers center like the ones I have mentioned before around South London, or perhaps one in your own borough.

I have even heard of carers even forming their own groups (peer support) and sometimes a carer may just want to go out by themselves to reflect and think things through.

Having confidential space should be a refuge of healing, a sanctuary that us carers can call our own. In order to help our loved ones, we should also do ourselves a favour and rest and heal ourselves with our own confidential space.

I am not saying this will be easy, sometimes it depends on how bad things are for your loved one, maybe you cannot bear to leave them alone for some time, but its vital for you to at least think about your own confidential space.

* Carers Groups

I have mentioned carer groups a number of times and there are so many activities that can happen at such carers groups. Carers groups can offer the following ways to connect to other carers.

– A place to relate to other carers.
– Information on services and updates.
– Learning from other carers.
– Sometimes you can have speakers come along and do a talk about a subject.
– A place to eat and relax.
– Update other carers on what you are doing.
– Raise concerns when its an acceptable time to do so.

There is so much more such carers groups can offer, I am sure some have skipped my mind, but if you as a carer do not belong to such a group, again check out your carers centre or maybe your mental health trust provides one in your area.

* Reading Carers stories

Have you checked out Carers Trust? Or Carers UK? They have blogs and stories from many carers. You do not have to be physically present to connect to other carers. Sometimes I have read blogs from Mind or Rethink Mental Illness. You can learn so much from carers stories or those similar from your loved ones illness.

* Connecting with other Carers at Events

There are many events that I have been to and although most of these are mental health events, you will get the odd carer event every now and then. Luckily South London & Maudsley have a carer event coming up for mental health carers in South London. This being the carers “Listening event”, which takes place on the 18th of September 2014 over at Prospero House. However why go to such events? The simple reason is it offers another opportunity to connect to other carers.

Some events can last all day, while some last perhaps around an hour or two. These events are usually tailored to the type of carer who attends them. If such events are successful, then its possible to form a network of carers supporting each other and engaging with the health services. Carer events are the place to be seen for carers and you can learn so much being at such events. Do not be put off by being surrounded by health professionals since they are their to learn from you as well, which is probably why the event taking place in September is called the “carers listening event”.

If your in the North, East or West of London, UK or in a different part of the world, try and attend a carers event to get yourself educated and connected.

* Connecting to Carers Online

I guess we have arrived at my favorite part of connecting to carers. We all come from different backgrounds and my background is Information Technology, notice the word “Information”? I like sharing my skills, knowledge and tips as information via technology. Its free or fairly cheap, its quick to access and you can have a global reach. Reading my blog? well that is because your online. Notice my twitter channel? well that’s because you are connected.

Connecting to other carers online need not be difficult, a quick Google search can bring up a wealth of opportunities, but be aware not everything is true online and its always good to seek professional advice, however the power of being online is the range of CHOICE that it brings.

* Celebrating with Carers

Sometimes we do it to ourselves, we sit back and fall into caring. Us carers just place ourselves last, its in our characteristics, have you met someone who calls himself a carer place themselves first before anyone else? Well ok, perhaps you have, but I am sure more carers just sit in the shadows doing what we do best without making a complaint, or making a statement or even engaging.

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Us carers need to connect to other carers, we need to celebrate who we are and make a stand not only for ourselves, but for other carers. My comrade in arms Bridget Jones and myself have just been nominated for carer of the year 2014 from the Royal College of Psychiatrists.

We may or may not go far, but for sure I am honoured and proud to have such recognition and I am not going to the ceremony looking to win, but going there to celebrate. This celebration is in order to connect with carers and mental health professionals.

Us carers need to stand out from the shadows to form a network and be counted, we sometimes just fail ourselves and plod along caring hoping someone will notice our efforts, but its not always like that. Its time to connect and the time is now.