Medication – my old friend!

Just wanted to get something down about psychiatric medications and the relationship and mindset I have had with it over the years. It is one the most widely stigmatised and debatable groups of medications amongst patients and non-patients. You ask anyone in your social network about antidepressants and you will get a different attitude and opinion about them. Not only did I grow up around poor monitoring and over use of medications in psychiatry in the late 80’s and early 90’s with my mother’s care, I then found myself in the mental health system since 2008. I resisted for years to take them. I feared and suffered without the help they can offer patients like me, for years while raising my child. At the time I was in and out of hospital with panic attacks and the depressive mood was following me round like an extremely dark cloud. Whilst I was on an 18 month waiting list  to see an NHS psychologist in Manchester in 2010, I had to do something and that was to agree to see the GP and take something.

Fast forward 10 years, I am now on my 3rd different type of medication and currently experiencing horrendous side effects whilst sleeping. Insomnia caused by electric shock type sensations and involuntary muscle jerks throughout my body when I am just drifting into sleep! Torture is an understatement! Countless days I have spent unable to function and enjoy the beautiful surroundings of Haslingden. I don’t think this side effect it is listed as one of the many side effects you may experience according to the patient information leaflet. You don’t get enough time with a prescriber to find out about side effects as we are all biologically different. It is a case of what ever mud is thrown at you, if it sticks, then it’s helping towards the bigger picture of mental health care. With a 12 month period, I have gradually built up a dose from 0 – 220mg per day and now on the slide back down to hopefully a more trouble-free dose. I feel insomnia has always been an issue but this medication has made it a lot worse and I am now taking a drug for insomnia! Like I said to the GP this morning, I need to find the balance between a therapeutic dose and not wanting to throw myself under a bus! I may be on a slow reduction or a change over!

What has been important for me is trauma based therapy. We all know about CBT, person-centred counselling and some support groups but little is known about psychotherapy and other talking treatments without a bit of research and peer support first. The  medications enabling me to cope and function. Not about being ‘happy’, its being able to tolerate the daily challenges and deal with anything life decides to throw at me.

I note from recent media and so on that anti-depressant prescribing has massively increased , especially in young people. Self harm has reached levels where A&E cannot cope and I have been to a recent suicide bereavement conference to validate these facts. It is not just my writing. This is largely due to social media, image focused media and the fast based pressures of society and what is expected of young people. I quit Facebook this month quite simply because I wanted more time for other things and to ‘like’ myself and not another drain on my time updating news feeds and hoping others will like it! I asked myself, ‘is this a good use of my time? No was the answer. So I moved on. If friends and family want to be in my life, they will make time to see me call me or message me, not acknowledge me in a news feed. There are lots of alternatives to socialising anyway!

Over prescribing is not good on any level and it is actually costing the NHS more money long term, especially when you start to look at what is required to enable you to stay  safe on medications and what they do to the rest of the body. I am not trying to scare anyone BTW but without knowledge, how can patients have informed choices  and maintain well-being? What is missing is representation from the drug companies and GPs collaboratively,  to help patients like me choose a medication and then offer safe withdrawal or reduction if needed. However, they are in the business of making profit and that involves NHS patients buying and consuming. Your local pharmacy is a great place to start getting your medications reviewed each year or more if needed. So if you can start off with that mind-set, then think about what you are getting out of the medications and if it’s helping you do things in your life you want to do. It is not being negative towards pharmaceutical industries, it is being rational and putting your own best interests first. Anti psychotic medications are another discussion, so I will it there for now.

There is now more peer led forums looking at psychiatric medication withdrawal and patients are tapering off in tiny increments to become less dependant on the medication and lead a better quality of life outside of the medical model of mental illness. They are worth looking at and getting help from them in conjunction with a GP that wants to support you with your choices, not one that tells you what he or she thinks is best. You know your body best and the shift is moving towards patient empowerment and knowledge sharing amongst patients. Remember that.

 

 

 

 

 

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Happy new year…..!

What an interesting year I have had! Lots of bumps along the roller coaster of life. This year will be Ethan moving up to year 6, his final year of primary school, planning our wedding and enjoying my early 40s!

I am proud to report I have been sending time at home working on a new enterprise to help carers improve their well-being. Having spent many years becoming involved in my mums care plan and day-to-day care, I have used my experience to develop a new service that will collaborate with mental health research and focus on informal carers. There has been amazing support from researchers at the University of Manchester. I have also started looking at how I can help people save money on their day to day bill so lots to keep me a busy bee!

One of the highlights in December was visiting the DNA of care event hosted by patient voices.In 2014. I had the opportunity to create my short digital film from their 3 day workshop with Pip and Tony’s expertise.  It gave the chance to reflect on my life as a family carer and a snap shot of her struggles with severe emotional distress. Mental illness has a sneaky way of removing positive memories when you are depressed so this blog has become a reference to the days I was well and functioned enough to enjoy life. Blogging is therapeutic and I aim to give it more time in 2018! Digital story telling should be prescribed more than anti depressants!

Have gained some great training and teaching experience with colleagues at Pennine NHS care health and well-being college. I feel more confident and at peace to take each day at a time and improve my self-confidence by making new steps to be self-employed. I love being involved in research and valued as an individual. Being part of a huge team of professionals working towards one goal, of improving mental health services within the NHS.

I also aim to keep walking around the beautiful surroundings of Haslingden and Helmshore to get fitter and slim enough to fit into my wedding dress in July this year!

I also set up a new initiative here in East lancashire. a ladies only group. I hope this begins to develop to reach out to carers so they can more social networks and gain more friendships. This is getting the support from Community restart team from Lancashire NHS care.

S.H.E Flyer

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World Mental Health Day – is it more than just awareness?

I promised myself I would start to blog more often so here I am! It is good to have a little break from things.

I did my bit for ‘awareness’ today. I have made a short film via social media, presenting to the public the mental health challenges I have faced which go back to when I was in my childhood. Think I enjoyed doing the film, if it helped one person, it was worth it! It is 10 mins long and hopefully useful to others.

But alongside awareness, we need more services, sustainable, well funded local community groups and better trained GPs! We need timely, prompt assessment and services that last longer than 6 weeks and waiting lists, less than the current 6 months for certain types of treatment. I found ringing up every month and asking how far along I was on the lost, helped me feel I was getting closer to the first appointment. They wont give you info, you have to contact them. Be proactive. The rhetoric from our UK government promises early, preventative health care but I do not 100% trust what they say, they will deliver. Most health services are in a political dilemma and what was previously funded by local government, has been withdrawn. There are lots of services now, asking for a piece of the pie that has strunk in size over the last few years. Health inequality is a major issue in the UK, especially here in the North West of England.

Worth remembering, your GP follows NICE guidance – the stepped care model. This NICE guidance is worth a read as you can go armed with the know-how and key knowledge of what they should be doing to help you. There are also lots of voluntary sector services, such as peer led groups, mentors, walking groups, social activities to help your well-being. The GP will probably not be aware off any third sector services. Remember, GPs are gate keeps to a vast amount of health service however if you have a knowledgeable GP or nurse practitioner, share the name of your GP to others you know in the area. If your GP asks you questions about the social context of your emotional health (for example – what is going in your family life, how is your job affecting you?) then you’re on the right track. Emotional distress sometimes come from childhood or recent stress lifestyle factors. More importantly, mental ill health can deteriorate very quickly if not treated early, just like cancer – yet we see no public health advertising about it.

My video offered 3 tips I would give people about embarking on help and support. One of which is how important reading is around the subject of emotional distress and following peer led online support can be helpful. It can also me useful, in moderation as you can become over loaded with ‘awareness’, make yourself more burdened, read about medical labels, other peoples issues and often, a negative attitude and vulnerability that our issues can present. We can also read about how NHS secondary health services have made life difficult for individuals, stereotyping people with various severe mental illness and patients becoming ‘reluctant to comply with forced treatment’. I am not saying this is good or bad by the way, it is just out there in the public domain. On the other hand, some very positive health professionals are supporting people. It is much easier to write about negatives and what is not going well for us. Taking medication and tapering off medications is a hot topic at the moment and one the best groups I have found is ‘Lets Talk Withdrawal Podcast‘ on Facebook. It is an online community that no GP will refer too. The pharmaceutical companies should be offering more help to people with discontinuation syndrome from psychiatric drugs, especially around carefully tapering off. The NICE guidelines state 4 weeks which is completely unrealistic for many depending on dose.

I love the fact you can have a voice and meet others that have had same struggles and still are here to share their journey. I am not recommending certain groups, I am simply saying their is some choice out there for mass engagement to other peers. The power is shifting into the hands of service users and carers and we have a lot more patient engagement in health services now. We are the experts of our own conditions.

Life is not always a stroll in the park, it throws lots of difficulties in our path and suddenly, the unhelpful thoughts and feelings of our ongoing mental health is preventing us from enjoying our life. One of the first steps after reading peer support is speaking to someone else that you can trust. This normally begins with a GP or an understanding family member. If you are really lucky, speaking to your ‘mindful employer.’

On the whole, it has been a fairly hopeful few months for me and my family and it will be for you too if you just keep connected to others. Please speak to a GP if you want to access therapy and medication choices. There is way too much stigma around medication out there. Speak to people who takes medications. Services all have different waiting lists and other local organisations offer support too in different parts of the country. There is nothing wrong with asking for support. Shame can be some damaging so try not to let it get in the way of your well-being. I know how hard it is. I have learnt to ask for help. I am now managing to work a few hours a week with the NHS in an adult learning role and keep up with family commitments. My son is doing well and he will be 10 years old on 6th November. I want him to grow up fairly resilient and have supportive friends and a bright future. If you would like to connect me, here is my email:

Email:

livedexperienceprofessional@gmail.com

haslingden

 

 

 

Patient involvement in research

I was introduced to working in public and patient involvement (PPI) at the University of Manchester in 2011. Over the last 6 years I have had many changes in my own mental health and overall wellbeing. I wanted to get involved because my mother has been experiencing severe mental illness since I was a child and became recognised as a carer throughout most of my life. As a service user and carer I went through years of difficulties of accessing work and training and becoming involved in research gave me a step up into work experience alongside studying part time for my degree. These life experiences qualified and empowered me towards continuing my dedication and time to become a resident PPI contributor. My work experience at the university has increased my self-esteem, broadened my social skills and given me more professional experiences. The team at the department of primary care have been supportive and helped encourage me to be involved more in the department. I have been proactive and actively requested involvement in reviewing and offering my feedback on various aspects of the projects. One of my most memorable projects began in 2013, working on the advisory panel for the ClinTouch technology app to help people manage their long term mental health challenges. It was a big confidence boost to feel valued as part of the team.  I was able to reflect on my experiences of mental health challenges and call upon the times when I was a carer to someone with severe mental illness. I could finally apply my experiences in an altruistic manner for wider benefit.

Research works more effectively with patients as partners. As a PPI professional and effectively working alongside researchers, I can now assist with the collaborative working between patients and health research and offer a unique perspective on how projects can be improved and developed. I am also interested to help broaden the range of people that want to participate in health research, especially those who are in hard to reach communities and have anxiety issues with travelling to the university. I still continue to challenge my own health issues on a daily basis due to my own diagnosis of PTSD (post traumatic stress disorder) and mental capacity to work, so can empathise with many people attempting to make the step into research opportunities. My latest involvement in DEPEND, designed to improve data collection and usefulness, has given me the opportunity of more meaningful ways of becoming involved in community mental health feedback and review specific parts of the work streams.

As a team, we have had to deal with bereavement with loss of one of my colleagues, Neal Sinclair. It was wonderful working with him and he will be missed. It also makes you realise how precious life is and to make the most of the good days when you are living with mental illness. It also highlighted how prestigious I feel my role at the university has become and feel very proud of this! It has also raised the important issue of making sure we get support in our work if we are managing other long term help challenges as sometimes we may disclose and access difficult memories and experiences that we have faced as part of our work. I have been invited to feedback on this issue to help protect PPI members and make them feel supported in their role whilst speaking up in small groups of new people. There is a great opportunity for the research time to continue their professionalism and to recognise the needs of the individual members of PPI groups. This may add value to PPI involvement and attract new individuals who would of otherwise have not considered being involved in research. I have always had the mindset that if would help me network, help reduce my social anxiety and reflect positively on my mental health challenges. I feel I can work towards managing my illness rather than it dictating my life.

 

 

For more on ClinTouch advisory groups, see information follow:

https://www.herc.ac.uk/research_project/clintouch/

Leap into action!

I have been involved in various mental health research patient and public involvement group for about 5 years now. Yesterday I had a great day with others service users, carers and research professionals, coordinated by the McPin Foundation.

 

L.E.A.P (lived experience advisory panels) are a good way of developing your confidence, meeting new people and becoming more involved in research that can help change and improve mental health care. I am 100% all for service changes if it can happen. We live in a climate of constant service cuts and worry about services becoming harder to access.

For services to be implemented or changed, evidence is needed by structuring research. This is were experts like us come in who are living with mental health challenges and can really offer a unique perspective on how projects.

I found the courage to venture out over to Lancaster with the help of another member of the team and it has really given me a confidence boost. I would love to travel more……finances permitting! It was a positive experience and the meeting was very well organised.

If you want to read more about the Partners2 project please visit:

http://www.birmingham.ac.uk/research/activity/mds/projects/HaPS/PCCS/partners2/index.aspx

 

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Asking for help is a strength…

Thought I would share this talk. I watch this channel quite often. It is creative and inspiring. Many of the speakers deliver their talk from the heart, with honesty and they can get your brain working around different issues. It makes you think differently which is brilliant!

This talk is particularly important to me because of the title….’Asking for help is  a strength, not a weakness’. When we look at others we think they are coping better than us but we really do not know their suffering too do we? Is it only me that needs help? probably not…?What is resilience anyway?

I have struggled recently because my immunity has been low and generally managing my depression is a daily mission! I have made connections with more bloggers and at least being at home, I have still made connections with the outside world.

I got a phone call on Saturday from my friend, who was worried about me as she knew I was ill and noticed I had deactivated my Facebook account. It was nice to hear her voice and actually have a conversation. it was nice to know someone cared about me and actually made the effort to check on me, just like my family do.

I take myself away from social media quite a lot because it is time consuming and I fall into the trap of making comparisons.

I wonder why I cant be a successful as everyone else or why I dont feel as good as others ‘appear’ on their Facebook profiles. I also can get drawn into debate, conflict or politics! I see others sending time with their parents and think why dont I have this opportunity with my mum and I will just spiral downwards.

On a positive I will say I am confident  at asking for help but can imagine the people who don’t ask for help and wonder how hard it must be for them. There is nothing wrong with asking for someone to help you travel if you are scared of travelling or someone to make a phone call for you. Evening cooking a meal or making a decision, some of the tasks others take for granted. I did ask for help this weekend with the school run as I was too sick to get to and from school and with a meeting I have in June so I did well to reach out for help!

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I hope you can take some time to watch the talk…..

 

Pet Therapy!

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I recently finished knitting a blanket for my cat, Shire. She lay on it straight away, showing her appreciation for it and enjoying the warmth and comfort.

I have always found pets improved my mental health. They are non-judgmental and they don’t answer you back! 🙂 Cats love to be independent and have the freedom to come and go as they please. They have given me a lot of comfort over the last 20 years and I think the older I have become, the more I have appreciated them.

Want to volunteer with your pet?

 

You may find this wesbsite interesting to read:

 

http://petsastherapy.org/