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/

 

 

 

 

 

A thought for the day……

Depression makes you appreciate the connections you have with people and keeps you away from others drama and complexities. It forces you to battle some days and hold onto hope. You value your children’s smiles and achievements at school no matter how small. It gives you a greater perspective of life than someone who does not experience depression. It is a unique condition often experienced by highly creative and intelligent people (yes, thats me!)

If you know someone who appreciates the good days more than the bad days, be there for them, even if it is just give a listening ear and a cup of tea for an hour of your time. You dont need to guide the person, just listen and help raise a smile

If you have been feeling low for quite some time, be open and honest with your feelings and learn to love yourself before you give love to others. There is a lot of help out there even if the waiting lists for clinical therapy are long and the system is complex. When you get there, you are on a journey of your own recovery however that may be for you. Society is not easy and comparing our self to others is harmful. Accept where you are in life now with no pressure to be ‘successful’.

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Comparing yourself to others

Do you often feel caught up with what everyone else is doing? Do you look to others for approval?

Social media can be unhealthy sometimes that we look at others photos on a news-feed and it tends to make us fall into the trap of comparing our self to others. When you think about the life course you have taken and see how far you have come with your own life challenges, it makes you feel silly about how you have fallen into the trap of self comparison and neglected your true self.

Feeling that you need to ‘keep up with the jones’s ‘ is emotionally draining and time consuming. Consumerism and the media has a big part to play in that and the constant bombardment of advertising. As you grow older, you realise that the only opinion that matters is the one you have of yourself and no one else matters. It is nice to get a compliment from time to time from someone important in your life but when we are always looking for others to ‘like’ our life on Facebook or a recent selfie, it makes you feel others approval is important and needed to exist and feel ‘happy’. Life was completely different before social media and the mental health of young people may of been healthier.

I have started to feel I am on my own path in life now and I do not need the validation from others to exist and enjoy my life. It has took me a long time to begin to trust people and trust my own instincts. It has been a constant journey and a battle sometimes to connect with my own feelings and feel the need to go with decisions I have made. I am getting there and I am very proud of myself.

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A difficult day….

Through public health awareness and our networks, we hear a lot about cancer, diabetes, strokes and other illnesses but nothing about the link between chronic emotional distress and auto immune disease. I was diagnosed earlier this year with Graves disease, an auto immune disease which I had never knew existed. I have not known anyone with it other myself. I had my 3 month follow-up today with my consultant. I don’t even think UK NHS mental health services have caught up with it the link. I didn’t know about the relationship between childhood trauma and the body’s own immune system attacking itself, until I read a book by Donna Jackson Nakazawa titled ‘Childhood Disrupted – how biography becomes your biology and how you heal.

At my appointment with my consultant, I got a bit flustered as there were two other staff in the same room when I walked in and a lot of the symptoms that I discuss are depressive mood, sleep disturbance, eye problems, skin problems and so on. I think the name ‘Graves disease’ doesn’t sound very sexy either! I wanted to say, ‘Can you both leave the room please,’ but felt a bit nervous to ask.

I am still trying to keep up with everything as in ‘life’ and work out how best to treat my body to the correct foods and fitness that it may need. (she says munching a pizza slice!) I also have to think about my health, long-term and if it can be something that can be treated well with my anti thyroid meds and psychological therapy. I am a great believer in the psychological causation to many illnesses. The sad and equally good thing about it is, I have a curious personality and I do a lot of reading and ask questions about how I can help myself. There is no cure, although my consultant said it can go into remission. There may be things I can do to make my health more manageable. I feel I need to email my consultants secretary and ask for some more help with diet (In my dreams…!) as you don’t get the chance to speak about all your concerns in 20 minutes! That is one area that is quite over looked when you are given drugs, how to heal with food. I could talk about that a lot longer, but I’ll leave it for another time.

I reckon I have had this condition for many years and if it wasn’t of feeling ill with chest pains and having an ECG in the summer of last year, I would not be on this journey today. I am now I am thankful to the medical staff that got my thyroid levels tested and began the referral to see an endocrinologist. It makes you realise how things could not be picked up unless we listen to our body and probe further to find out why we are unwell.

Think I’ve had two crying episodes today. One with my partner and one with my son. Ethan is 9 and I am raising him with the understanding that it is OK to cry and get the tears out. It heals the soul and without crying, the world would be a miserable place! I don’t want Ethan exposed to a lot of upset in this childhood but at the same time it is more healthy to let him see me react to sadness from time to time without running out of the room and hiding away in shock! Sometimes I can hold in the tears though and sometimes I chose not too. I always tell my friends to let it out so I need to take a lesson from that. I have always said there should be ‘community crying cafes’ where people can go to have a good cry and meet new people without them feeling they need to see a GP or have the label of mental illness. There is also too much commercial gain from the major, profitable pharmaceutical companies but again,  but, wont go down that round on my blog just yet! I need to wait until my moods lifted!

There are people in our community needing to show emotion but self medicate with drugs or alcohol, get angry and violent and vent their emotions in other ways which have lasting damage because of a difficult life due to poverty, child abuse or even homelessness and as a society we are told not be depressed or anxious or at least the norm seems to be ‘happy, balanced and conforming with others’.

Anyway, I managed to get my son to and from school, go the library and buy some bananas today, oh and do some cleaning. I got through the day….!

 

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