A Chance to Change Scotland: Chance 2 Change Expert Reference Group with Lived Experience - report

5. Unmet Need

Topics that the group have identified for further discussion:

• Waiting all day for a GP to phone you back.
• Maintaining specialist support with regard to long-term health conditions.
• In regards to Mental Health - prevention vs. intervention.

Unmet Need

Waiting All Day for a GP to Phone You Back.

The original topic that had been identified was waiting for the GP. However, the discussion developed into many areas that the group felt were equally important to document. Group members are in agreement that waiting all day for a call back from the doctor is distressing, some of which could be alleviated with simple things that are outlined through their experiences below:

• One group member shared that they are a full time carer to their dad/step-mum as well as tending to their own mental health and due to these factors do not often get time to themselves. Normally when the person believes they have a free day, someone they care for might need a telephone call with the GP. This means the person with poor mental health that has been up all night has to be awake and alert to call the doctor at 8.45am (some surgeries this is 8am). This is exacerbated by having to sit with the person they are supporting the whole time because they are anxious about speaking to the doctor on their own as well as missing the call. The free day is ruined by a magnitude of stress that the person believes could be avoided. For instance, if there was a system in place where you could go online the night before and book a telephone consultation for the next day or even that week with a specific time slot added, this would relieve stress for everyone involved.
• Another group member said they are very distressed the whole day, so frightened to miss the call they won't even go to the toilet. The question they ask is that if you are given a specific time to see the doctor why can't there also be a specific time provided for the telephone consultation? The person also stated that even being given a two hour time slot would be better than waiting the whole day full of anxiety.
• One of the group members was honest in saying waiting on the GP to call them back stresses them out so badly that they need their daughter to sit with them the whole day. They get that worked up they become confused and panicked. They also shared "calling at 8am is very difficult when you haven't slept to then be kept on hold for 20 minutes only to be told all the appointments are gone. Sometimes the receptionist will ask if it's urgent, "what is urgent"?
• A group member echoed the points above adding "you wait all day, you can't go out because you need privacy when speaking with the doctor especially when it's a sensitive issue". Another group member stated "it's terrible because if I turn up 5 minutes late for an appointment, I have to wait 45 minutes to an hour, yet I usually have to sit in for 7 hours waiting on a call back from the doctor. All group members are in agreement that the provision of a time slot would be more beneficial.
• One individual would like to express the challenges around having bloods taken for themselves and people they support. Presently you need to call your surgery to verify you have to have bloods taken, you are then provided with your CHI number as well as a phone number to call to arrange an appointment with phlebotomy. This appointment could be arranged for anywhere in the city which is believed to speed up waiting times but how about the people this person supports that struggle to even get to their own surgery. Another member echoed the same story but said they went through the whole process getting the CHI number from their own surgery to call an additional phone number, to be sent for bloods at their own surgery - which in their words "was a complete waste of time". This is an example of the confusion that can be caused when systems are changed without informing/consulting with the individuals that use them every day, as highlighted by the concerns of the group in relation to the recommendation of the 'Expert Medical Generalist' role.
• A member would also like to add that the pre-recorded message which you now get when you call the surgery with three options just causes confusion and extra anxiety. The person said: "I called the surgery as directed to make arrangements for my bloods to be done expecting to speak to a person but instead was given three options which did not match what I was phoning for. In an absolute panic I hung up the phone and thought about not having the bloods done at all". The person shared that if there was a fourth option on the pre-recorded message for "everything else" they would have pressed that option which they believe would have reduced the overwhelming stress and panic.
• One member would like to document the ongoing issue that has plagued them for many years. "I suffered from a prolapse which needed something professionally inserting, which I was told would hold everything up. I was aware this piece of plastic was due to come out and called the hospital because I was concerned and experiencing a range of symptoms from pain to smelly liquid. At the appointment to have it removed I was told it should have been removed six months earlier! I was also given a new plastic piece which looked like a big dummy and told to insert it myself. I was so frightened with not a clue on how to insert this contraption! Two years have now passed and I am still dealing with the same problem, I just wish someone would listen to me and try to understand the difficulty of dealing with such a sensitive problem on my own".
• One person shared that they called their doctor to speak about their Hormone Replacement Therapy (HRT) and the GP expressed their concern as they had not had any communication or correspondence with their psychiatrist in nine months. In the group members words " I only had to see my psychiatrist once a year because my Bi-polar was stable, I was well but last March due to lockdown I started to become manic" (as documented above). "The psychiatrist called six months ago and told me there wasn't very much they could do at the moment that they would get me in when Covid was over! Which is when?" It is deeply worrying in this case like many others that health professionals do not communicate more which could literally be the difference between life and death. This evidences the need for the recommendation to support primary health care professionals to work more together (below). As Support Worker for C2C I find it deeply distressing that mental health needs have to wait for Covid to be over. It is highlighted in section 4 that this person has been struggling with impaired hearing which is having a considerable impact on communication, isolating them from their family/peers, and increasing the risk of fracturing an already fragile mental health. As of November 2021 this person has been waiting 12 months for a hearing consultation and as stated on this lack of support/assistance reinforces an "I don't matter" mentality resulting in people who are less likely to ask for help or engage with support. The person and the group are in agreement that they are sick of Covid excuses. Hearing is one of our primary senses and it must be exceptionally frightening as well as frustrating to lose. Can you imagine being manic or having auditory/visual hallucinations and not being able to grasp or hear reality?
• A group member shared that since 2019 they have had ongoing problems with their foot without any definitive answers. After an x-ray, they received a call from the GP receptionist who disclosed it wasn't much to worry about just looked like arthritis and then booked an appointment with the doctor who told them it's nothing just wear and tear which they feel is simply not good enough as it does not help them live with the problem! They asked to see their x-ray but were told no and would like to understand why? They were also offered a referral to the foot specialist to be fitted for surgical socks but were told it could be a considerable wait. Feeling the constant pain and knowing how long their friend has waited to receive a hearing consultation forced them to buy the surgical socks themselves at considerable expense as they had to have them imported from a clinic in America.
• The same group member would also like to share an experience where they recently called to speak to a specific doctor to be advised this doctor does not work Mondays and to call back on Thursday. They called back on Thursday and were informed that the requested doctor would call them back but he didn't - "I got some doctor I didn't know meaning I felt annoyed and no further forward. I can't repeat enough See me, Listen, Be honest, Help me understand and remember I'm an expert in your professional hands."

Maintaining Specialist Support with Regard to Long-Term Health Conditions

I suffer from a rare and extremely painful long term health condition called Hidradenitis Suppurativa (HS) which means my brain sends signals to my body advising of an infection. This will force my body to completely shut off that area resulting in painful abscesses ranging in size from a small pea to a football which will eventually erupt leaving huge scars all over my body. Unfortunately there is no known cause or cure for HS and most GPs/professionals have never heard of the condition which in the past has led to torturous mistakes. HS can flare at any time, requiring drug combinations that can only be prescribed by a hospital/specialist. I currently have a great doctor who was honest in explaining that they know very little of this condition and would be taking the lead from myself and dermatology as we are the experts. Thankfully for the last year my condition has been under control and the dermatologist is very impressed but because all appears well I can no longer remain a patient at the dermatology clinic! I totally understand at present I do not need that specialist support but given the nature of my condition that can change rapidly. I asked the dermatologist if there was some kind of system for people like me because I was worried about my condition flaring and not having specialist support. I was informed that there is no such system and the best she could do was retain me as an out- patient for the next six months but if nothing happens in that time - "You'll be signed off my books because I have a waiting list as long as my arm!" I asked what I should do after those six months and was told to see my doctor and make a new referral! Why should I have to bother my doctor who now needs to make another referral because I require a specialist? How long will I wait to be seen as a new referral? How many unnecessary painkillers and drugs will my doctor have to prescribe while waiting on this appointment? More importantly how do you retain specialist help in regards to a long term health condition?

This is just one example of being unable to retain support in terms of long-term health conditions. Sadly, this is not an isolated case (as documented in the Chance 2 Change group experiences, section 4) and there are many examples of peoples' long-term health needs not being met (especially recovery/mental health) leaving people to suffer needlessly whilst unnecessarily increasing administrative pressure on the NHS and overwhelming already underfunded GP practices.

Mental Health/Suicide: Prevention vs. Intervention

According to the Samaritans website, "there were 805 deaths by probable suicide registered in 2020, a decrease from 833 in 2019.^[1] Data from 2020 shows that people living in Scotland's most deprived communities remain three times more likely to die by suicide compared to those living in the most affluent communities."

These statistics and geographical gaps are absolutely shocking but what is even more disturbing is the powers that be knowing these facts, doing nothing about it and people are dying unnecessarily.

In 2016, I completed the Health Issues in the Community (HIIC) course and along with two other people chose the topic of suicide to research as part of the final assignment. The data available at that time showed 659 suicides in Scotland in 2014 and 656 in 2015. The Samaritans state there has been a decrease in recorded suicide rates since 2019 which is true but considerable concerns remain over the lack of investigation into the overall increase since the data supplied in 2015. It is disgusting that our government along with the British Medical Association have not done more to prevent the many needlessly lost lives. The research conducted in 2016 highlights the concerns as well as positive tangible ideas to promote suicide safer communities, as described below, but no one listened resulting in more lives/families/communities continuing to be destroyed by suicide.

The HIIC research highlighted a lack of information, posters or helplines at suicide hotspots. How difficult would it be to run off a poster with lifesaving information and have a helpline supporting it? Another problem is where to go if you feel suicidal:

• One nurse stated "not the doctor....."
• Another nurse stated "there is a waiting list for primary health services and that you should always speak to your doctor to gain access to secondary health services."
• A range of services were contacted and asked "if they would help me if I wanted to kill myself" to be informed "No" – for various shocking reasons. We concluded that there is nowhere that you can go or call and just say "I want to kill myself".

Some places made us feel terrible for just asking the question, enhancing the thought- "if I really was suicidal and being treated like I was doing something wrong – I would probably kill myself".

Clear information/communication across the board is key to eradicating confusion about where to go, what numbers to phone, etc. We all have to work together as previously documented (section), Mental Health, Long-Term Health Conditions and Community Voice. A united team, promoting recovery incorporating prevention strategies would reduce the number of deaths by suicide not just here in our local communities but for Scotland as a whole. A good starting point following the 2016 research would be to print information posters with helplines and display them everywhere in the community. Training in Mental Health First Aid and ASIST should be provided to employees/people at suicide hotspots. For example while collating the research we spoke to a local professional at a known suicide hotspot, who shared that they are provided with a list of vulnerable people to watch out for with no training or support and instructed that if they have any concerns to call the police who are overwhelmed and entirely the wrong service. Sadly at the time of writing, another beautiful soul has been lost and a family destroyed due to a preventable suicide at a well-known hotspot. Another considerable concern is places such as DIY stores being a suicide paradise and once again their staff having no training on how to identify the warning signs or more importantly how to save life. Under Health and Safety legislation, every work environment is required to have first aiders - this should be extended to include mental health first aiders.

The most ambitious idea would be to build local walk-in hope cafes/well-being hubs. This would provide a safe space where a person can just say they don't feel right and all the relevant professionals and resources are on hand at the point of crisis – no more waiting lists, no more gaps – life with hope! After the research was relayed to our community we had the opportunity to present our findings/ideas to a senior manager at the NHS who just laughed at us and stated "you don't get money for hope!" Maybe if the Scottish Government and all medical associations invested in hope we wouldn't be left with so many unnecessary deaths on our hands.

With regards to prevention vs intervention (responding instead of reacting) - we should promote positive mental health and not wait until crisis, teach people practical coping skills that will enable self-prevention, reducing the need for intervention.

The Voices of C2C in Response to Mental Health/Suicide Prevention

Prevention Vs. Intervention

“During an extreme bi-polar episode I spent time in a hospital, whilst there my hay fever was playing up really bad and I asked for one of my pills which is on repeat prescription. As I am seen as mental I am told I don’t need a hay fever tablet. I nearly let those so called professionals take my power but then decided that I know me and I know what I need, and called my own GP who appeared at the hospital with the tablet. My GP not only helped my hay fever but also my mental state just by seeing me as a person.”

“Nurseries should be teaching kindness, relaxation techniques, exercise which primary schools can build on and develop along with other practices such as the bullying/apple demonstration, ‘blue eyes - brown eyes’ experiment, etc. High schools could further expand by teaching mental health first aid/suicide prevention but most importantly educating young people on how to look after their own mental health as well as those they care about. Prevention before crisis.”

“No time on how long it takes to get well - it takes as long as it takes.”

“Kindness empathy and compassion are essential - I was in hospital because I tried to take my own life and the doctor told me the next time I do it - to do it right!”

“Medication has its place but it won’t fix me, talking therapies can help but I need purpose/connection which cannot be attained through medication alone. Well-being groups provide focus, build confidence/self-esteem.”

“Suicide gaps are getting bigger but no one cares.”

“Prevention stands a better chance of saving lives than intervention.”

“Doctors ask “what do you want me to do?” - “I don’t know, I am here because I don’t feel right.”

“Children as young as 10 years are learning on the internet how to kill themselves, videos are being put into kids games for example Santa telling children to stab themselves or their parents to get more Christmas presents - is anyone monitoring this?”

“I would rather know how to take care of my mental health than waiting until I’m suicidal because then it’s too late.”

Peer Support – A View Through the Lens

"Every Monday when I come I feel so happy, I really enjoy my Chance 2 Change group and I enjoy seeing my friends that all go with me. We do so many things such as out walking, photography, keep fit, diamond painting, self-defence and so much more. In the future we are going to be learning how to use tablets and lots more interesting things."

"The support worker has been so good for me and if it hadn't been for them and the group I wouldn't be in such a good frame of mind. My life is so much better since I have been involved in Chance 2 Change. I have been so happy with all that I do and take part in with the group."

"Having fun at the outdoor gym."

"Chance 2 Change – masked friends forever."

"Being in Chance 2 Change has taught me new skills like photography."

"Chance 2 Change gets me out of my bed."

"The group is like a family to me as from the first day I joined they welcomed me as part of the group. As a group nobody judges anyone and when you're having a bad day, the group are there to listen and they make you feel better by having a laugh and a joke."

Climbing the Humphrey - "Chance 2 Change has been challenging, as the group has helped me to challenge myself and to do things I never thought I would do."

"Chance 2 Change is my safe place where I feel safe and I can share my problems - I know what we share in the group stays in the group."

"Chance 2 Change gives me the confidence to believe in myself."

"Chance 2 Change for me is like a family - when I come in feeling down they lift me up by just talking and laughing within the group."

"Chance 2 Change's family home - the staff are amazing, part of our extended family. The place is equally as important as the people."

Facilitator's Summary

Group members decided collectively that they should be known as Chance 2 Change which couldn't be more appropriate given that group is a safe environment where confidence is developed enabling people to make the changes they desire. The environment needs to be right to create a safe place where people can grow. As one member states above "the place is equally as important as the people!"

All groups should start with a code of conduct; C2C call it "Dae As Yer Telt" (appendix 1) it has to be built by the group so that they will enforce it, creating empowerment and responsibility from day one. Group structure provides motivation and discipline in terms of time management, completing tasks/homework, etc. The group decide the programme which generates choice and decision making but most importantly creates empowerment. All new skills/hobbies/learning achieved unconsciously builds confidence, raises self-esteem, promoting focus and purpose which generates positive coping mechanisms. It is not just about a few hours per week but about building self-esteem/the right frame of mind to cope with life. The groups' greatest motivation is each other, supporting/lifting one another up when times are hard to screaming with delight at individual/group achievements. Programmes should be achievable but equally challenging to build confidence and self-esteem - all achievements no matter how small are significant and should be celebrated. One small step forward is success and should be measured as such.

Chance 2 Change isn't a talk shop where people sit and discuss negatives but a social network with a choice of programmes/activities that are designed to develop skills, build confidence/self-esteem whilst teaching discipline, problem solving, overcoming challenges in a positive way that can be adapted into any part of that person's life. Activity evaluations (appendix 2) are completed at the end of every session to monitor how well things are working and inform change where required, as well as quarterly group evaluations (appendix 3) empowering people to have their say in the decisions and programmes that affect them. A collective togetherness is developed through the group which creates a significant change in perception such as "I am not alone." Sometimes knowing there are other people who feel the same as you can provide comfort and reassurance which is why we feel peer support is just as vital as professional intervention - people identify with lived experience. Social connections are vitally important particularly in light of Covid-19 restrictions - it was these links that kept the group motivated and individuals well.

Programmes, Confidence, Achievement, Self-Esteem, Success
Empowerment