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

3. Mental Health, Long-Term Health Conditions and Community Voice – Chance 2 Change Group Discussion

Within the discussions that took place between the C2C group members it became clear that Mental Health, Long Term Health Conditions and Community Voice are linked and the discussion points have been compiled to reflect this. We would also like to echo the point made originally within the Initial Ideas for Participation section - we are all recovering from something and mental health, trauma, addiction, long-term health conditions should be viewed together and not in isolation, for example the impact that conditions such as strokes have on mental health and vice versa.

• Addiction has proven links with trauma and adverse childhood experiences (ACEs) which clearly impact mental health, diluting suicide rates, which are recorded as drug-related deaths. For example, Heroin or alcohol addiction is a form of escapism, which can result in a slow painful suicide. Mental health, long-term health conditions, addiction, trauma, ACEs should be viewed in the same way to enable the promotion of recovery. For example, when addiction services only deal with 'addiction' and mental health services only deal with 'mental health' we end up with fractured services and lost lives but imagine the service that we could provide if we were one united team promoting recovery?
• Community Voice is fundamental in supporting better understanding of where systems have failed people's needs, but more importantly to enable improvement of services and quality of life. The group discussed personal experiences of when their health needs were not met and identified small changes that they believe would have made a huge difference to them and other people who could potentially find themselves facing the same situation. These experiences are detailed below as well as available via a YouTube video produced by the Chance 2 Change group: https://www.youtube.com/watch?v=xjI5xJC7dbI.
• One of the group members suffered a stroke and struggled to remember their own name or read. Whilst they remain forever grateful to the NHS for the care they received, there was nobody to support them with the significant life changes that affected their mental health. It is ironic that somebody finding it difficult to read is handed a 'stroke book' as a means of information. As much as this book contains useful information, working with the person to understand their individual needs is key to promoting recovery in the 'whole' person.
• Another group member has suffered from incredibly dark thoughts such as wanting to overdose and end her life. When she found the courage to speak to her GP about these thoughts, she felt as if they did not take her seriously because she was not screaming or crying. She was given the impression that they felt she was "off her head". Sadly, this made her life feel even less valuable, particularly when supplied with a prescription for a two-month dose of antidepressants. Furthermore, she was provided with a number for the Primary Mental Health team and having had this negative experience took another four weeks to regain the courage to make that call. The group member feels that had the GP listened and made the referral on her behalf that this would have reduced this additional anxiety. Unfortunately, this is not an isolated incident and highlights the experiences of so many people. If somebody is having thoughts of ending their own life, whether they have made a plan to action these thoughts or not, they are clearly demonstrating poor mental health. Immediate intervention is vital to reduce the alarmingly high suicide rate, whilst promoting positive mental health.
• Another member was due to undergo a mastectomy and was invited into hospital to view an explanatory video. On arrival, the nurse stated that she would be leaving the member to watch the video themselves as they found the video too traumatising. Whilst it is clearly good practice to enable people to be informed of the procedure they will be facing this must be done in a way that offers reassurance to the person who is about to face life-changing surgery. Following the operation whilst still in recovery the member regained consciousness to find a nurse injecting her with something and asked what it was. She was told that her body had gone into shock and that she had nearly died during surgery, not to worry and to just go back to sleep. Ever since this has happened, she has tried to find out exactly what took place and nobody has been able to answer her questions. She has even requested her medical notes but has been unable to understand them due to the medical jargon contained within them, which has left her mentally exhausted. Furthermore, whenever the member now has to visit hospital she tries to explain what happened previously but feels she is never taken seriously and that the doctors look at her as if she is crazy. Undoubtedly, the trauma of undergoing a mastectomy would have a negative mental impact but the standard of practice here exacerbated anxiety with a detrimental impact on confidence and self-esteem. The group member expressed that had somebody just communicated what had happened in an honest way that they could better understand what it means for them, enabling them to process the situation.
• Prior to joining the group, another member who suffers from Bi-polar disorder was reliant on a range of medication. Having joined the group this person was able to reduce their medication to one tablet a day and their psychiatrist was impressed with the considerable work they had been able to do on themselves. At the start of lockdown, the member lost the entire support network that kept them well and had begun to become increasingly manic. When seeking help her usual psychiatrist was unavailable and the replacement without reading her notes properly or knowing her as a person prescribed incredibly powerful medication, even though the member was adamant they did not want it. The medication caused the person to feel as if they were "doped up to the eye balls" as well as causing slurred speech and distress. It took considerable determination from the group member, the original psychiatrist reducing her medication as well as support from her family and peers to enable the person to feel themselves again. This is another example where a member felt unheard and the impact had devastating consequences, which could have been easily avoided. The member strongly believes that their own psychiatrist should have been contacted, their notes should have been read but most importantly, their views should have been considered. Any medical interaction should be a 50:50 partnership with all parties seen as having equal expertise.
• Another group member has struggled with alcoholism for the majority of their adult life. They have been involved with addiction services, which have provided some positive support in terms of help with understanding the health effects of alcohol and the ripple effect this has on family and loved ones. However, addiction services are designed to keep a person within the service so that they are constantly surrounded by their addiction and its consequences, which promotes a negative cycle of relapse and reliance on the service. Having moved away from this type of support and becoming involved in peer-led community groups this member has been able to build a positive support network combined with programmes that build skills and confidence enabling this person to live the life they choose.
• One of the group members has suffered from trauma, anxiety and depression for most of their lives. In 2019, they were attacked in their own home with a knife and a hammer, causing many of their past traumas that they had worked hard to overcome to resurface. This meant that the person's mental health suffered severely and they sought support with their increased anxiety and suicidal thoughts. Their GP was helpful in signposting/referring them to professional support which unfortunately never materialised. Had it not been for her family and the group this member might not be here now! Trauma has a disastrous effect on mental health and when somebody finds the courage to seek help, it should be readily available. As much as the GP was helpful, 10-20 minutes to explain that I want to kill myself and the trauma behind that is nowhere near enough. Furthermore, people who experience trauma are often provided with 6-12 week time frames to receive therapy, which is inadequate, as ample time is required for the person to work through and process their thoughts and feelings before changes in behaviour patterns can be made.
• Some years back one of the group members completed the Health Issues in the Community course (HIIC) and their chosen research topic was suicide and specifically the suicide death rate in Drumchapel. When investigating this subject they were informed that it would not be possible to receive the specific suicide rates for Drumchapel, as it would mean they could potentially identify people. It is hard to understand this as – how can it be possible to identify anyone from a statistic, which makes us wonder whether they are even recorded? Statistics should be there to guide future decision-making and improvements and this can only be done if they are accurately recorded. For instance, Glasgow and Greater Clyde covers a considerable area that has a mix of the poorest and most affluent areas which enables us to understand trends in medical care/provision as well as the health challenges faced by large geographical areas. Statistics need to capture suicide trends in individual areas such as Drumchapel, rather than large cities or areas as a whole.
• More recently, the group has completed the HIIC course and are questioning why there is such a disparity between poor and affluent areas on a range of health issues. For example, the number of people prescribed medication for anxiety/depression/psychosis is way above the national average in Drumchapel but way below this in Hillhead. This has raised a number of questions amongst the group around how these statistics are recorded. It is known that Propranolol is prescribed for migraines as well as anxiety - is it likely that someone with migraines is being included in the statistics as having anxiety/depression/psychosis? Equally, there are many people that will inform their GP that they are suffering from poor mental health but choose not to accept medication – this should also be recorded to accurately determine the level of poor mental health in a particular area. It is interesting that we can record rates of anxiety/depression/psychosis for specific areas but are unable to ascertain the same level of statistical detail for suicide rates.
• The group were unanimous in describing doctors and healthcare professionals as unkind and uncaring. However, if you explore the reasons why these professionals come across like this it is interesting. For example, GPs are at the frontline of every trauma, mental and physical health condition with no supervision or outlets to express the impact this has on them. Doctors/Health Care professionals like all humans put up barriers as coping mechanisms to deal with difficult situations, which can be perceived as unkind/uncaring.
• It is fair to note that Health Care Professionals use a checklist when assessing Mental Health and suicide but people's feelings do not fit into boxes. A checklist enables professionals to ascertain whether a person is at immediate risk but this unfortunately results in people feeling as if they are unheard and do not matter which can accelerate/impact suicidal thoughts.
• It cannot be emphasised enough that whether a person appears to be at immediate risk or not – they are at risk, which at any given time can accelerate to high risk, requiring immediate support at the point of entry.
• C2C was initially developed to tackle long-term health conditions and we are proud to continually achieve and promote recovery in the person rather than the condition. However, it has come to the groups' attention that some of our members have not been seeking medical support because they feel that during the current pandemic with people dying and the NHS being overwhelmed, that they don't matter. For instance, one of our members who has been clinically diagnosed with poor mental health is currently struggling with impaired hearing, which is having a profound negative impact on their communication. This shows the positive impact of peer-support as it was through discussion with the group that the person realised that they do matter and sought support through their GP. However, following a referral they have now been waiting six months (which has now been over twelve months) for a consultation, which reinforces the person's original thought of 'I don't matter'. Further to this discussion the group also highlighted concerns that as a result of Covid-19 a range of appointments such as diabetes/stroke check-ups as well as cancer clinics are being deferred and/or cancelled having a massive negative impact not only on those that are vulnerable now but the masses that will become our future vulnerable.
• The groups thoughts and experiences clearly highlight areas for change, some of their most notable ideas are summarised below:
• See me – I am a person with feelings.
• Listen – my opinion matters
• Be honest - even if you don't know because I would appreciate that.
• Help me understand - Please don't tell me what to do, offer me advice and where appropriate alternative solutions.
• Remember I am an expert in your professional hands - 50:50 partnership, each valuing the others expertise.
• The group would also like Peer support to be taken into consideration, as it is their experience that people build confidence in people far more effectively than medication.