***TRIGGER WARNING*** This post talks in detail about the current wait times for NHS care, as well as mental health treatments and physical health pathways. The post will touch on suicidal thoughts and the effect of delays in crisis care. Please only read on if you feel strong enough. You can find more information for mental health and suicide prevention support lines on this website, as well as charities that help with specific health concerns on my Get Support page. Thanks for visiting. ***TRIGGER WARNING***
Last week I spoke about the triggers felt by people in the disability community when the media fails to represent us in a balanced way. If you fancy reading that the post is called Ableism and Me(dia).
This week I wanted to talk about the role of various support services and whether, in the current climate, they are actually as useful as was intended.
The role of charities and other organisations in supporting those living with any health concern has never been more important. They are relied upon now more than ever to fill in the gaps left by the NHS and Social Services, both of which are currently overrun with patients on waitlists and backlogs. Those delays in treatment have become so severe that they effect people with critical injuries, life altering illnesses, and even those who are terminally ill. Treatments and checks for those diagnosed with cancer are delayed far past the promises made by governments in years passed. While these delays are largely a result of pandemic catch-ups, staff shortages and logistical nightmares, the people who need the help are suffering more than ever.
To help with resolving the problem (at least temporarily) many interim services now exist to carry patients through until their long-term treatment is ready and available. NHS mental health services (including crisis lines) rely on charity helplines to fill in the gaps when patients have to wait. They hand out their numbers when no one is available to give clinical care. The same is true of physical health wait times, with overrun departments passing out details for local group therapy, online charity classes and even podcasts to help patients with wellness, pain management, and diagnostic acceptance.
I’m not basing these statements on conjecture – I have experienced all of the above first-hand and on multiple occasions. Caregivers tell me it’s industry standard practice now that timely treatment and care isn’t possible. I could spend hours writing about everyone’s frustration at the government for allowing the NHS to become so fraught, about my personal anger that NHS crisis services expect patients to wait up to 3 days for help when they’re suicidal, and asking political questions about the solutions and who’ll make them happen. Of course I could, but I’m not qualified, experienced, or even energised enough to provide such opinions.
This post is specifically pondering the role of the services that are plugging the gaps. Whether charities and other organisations outside of the NHS and social care can provide the support that’s actually needed. If this is the sort of help we need, or the sort of help we dread.
Do interim services solve the problem, or create a series of new ones?
I’m not unfamiliar with waitlists. Personally I’m currently on 3 NHS waitlists, and I’ve been there for some time – the Community Mental Health Team for my first psychological intervention, Rheumatology and Neurology. Rheumatology specifically has been for over a year and I’m not expected to reach the front of the queue until the end of 2024. Even then treatment won’t begin, I’ll just be offered a date for my first appointment. Although this isn’t a critical health concern, it is to manage my EDS, which causes my joints to swell, pop, sublux and dislocate. Clearly it can get very painful, which has an impact on my mobility, and all this is mentally taxing. The wait is obviously prolonging my pain and the longer I’m in the queue, the worse my pain, injuries and mental health are getting. In the end, these delays make me a bigger burden to health services as a whole.
My partner has family members who are on waitlists too, some critical. We know of people who, after being diagnosed with cancer, waited months for a treatment pathway to appear, and now face more waiting for further tests. In 2009, when my mums cancer was found, her tests and treatment started in the same week. In 15 years things have changed a hell of a lot.
Saying that, even in 2009 charities played a huge part in my mums cancer journey. As someone with a terminal illness, she was provided with a team of palliative care nurses and support workers through the charity Macmillan. They were with us as a family until the very end and their kind, respectful and dignified support helped mum to feel safe and comfortable as the weeks and months passed. There’s no question; without them, Mum would have suffered even more both physically and mentally, making her final weeks much tougher. Additionally we would have struggled as a family with managing her care needs at home, which is where she wanted to be.
Going back to my own waiting line, since the pandemic, there’s been a shift in how waits are managed, and a distinct increase in the number of times I hear…
“Yeah, the wait list is pretty long at the moment. I’m sorry.”
And now, this sentence is usually followed by…
“but here are some support lines/community groups/charities you can call in the meantime.”
The types of organisation I’ve been offered vary from place to place, but to give you an idea, over the years I’ve had interventions and general help from mental health helplines, charity crisis lines, online support groups for long covid, EDS charity helplines, care assistance organisations, SEN helplines, advocacy helplines and the homelessness charity, Porchlight.
Porchlight is a good example of how these support organisations have evolved to plug the gaps created by health services that are overrun. This business has gone from being a homelessness charity, to an organisation offering support to anyone who faces inequality, including me and many others whose health has been negatively impacted following COVID-19.
The amount of time I’ve needed such support also varies. Calling a charity crisis line instead of speaking to an NHS crisis line is an intervention that’s completed in a matter of hours. Their help is fast and direct, and hopefully very successful. But having the support of Porchlight, a service that could specifically help me to achieve some important life goals and become a functioning part of society again, has a much longer (but limited) timeframe of 12 weeks.
Despite every intervention being useful and positive, some weren’t without their drawbacks, and in some cases, this made them a bigger problem than solution. To explain, my wait for NHS psychological intervention is long…years…but it’s already been discussed that the help I need with trauma, severe social anxiety, abuse in varying forms, health changes, and grief, is going to take some time, pain and effort to get on top of. That’s why I’m waiting for the help – I can’t live with the heavy weight of it all any longer. I feel broken, sad, empty and like a burden myself. Some days, like 1 in 5 people in the UK, I wonder if I can keep going at all. If I even want to.
In context, support from Porchlight is brilliant. The staff I’ve been helped by over the last few months have been really lovely, relatable, kind and patient. But as much as I love them, I only have them for 12 weeks. Make no mistake, this time limit is something they adhere to carefully. For me, and anyone else who’s lonely or isolated, this means coming to like, rely and trust someone new, only for them to disappear when you still need support.
Although it didn’t seem like an issue, when I started feeling bereft (long before the service even ended) I considered if this was an issue with other services I encounter, and therefore potentially an issue for other service users. The answer was yes. Crisis lines are an excellent solution for an immediate problem, but it’s anonymous, it’s clinical without being therapeutic, it’s like explaining your fear to a void. Once it’s over, you’re back to square one. No continuity of care, no change in your position, only hope that you won’t end up desperate again. For some people anonymity in a crisis is helpful, which is great, but for others discussing mental illness with a stranger is a big hurdle that might make a service impossible to engage with.
Group therapy sessions completed online sound like a good idea; a selection of like-minded problem with matching challenges all coming together to talk about their problems and the possible solutions. But after 6 sessions, these anonymous people and the group leaders disappear into the ether.
In the end, bedside manner is a big part of mental and physical recovery. Trusting your therapist, being able to rely on their interventions, believing they care, is all part of the journey. When these things are taken away, the chance of a lasting recovery is greatly reduced. On the whole, this community of patients is suffering from social issues as a result of the pandemic. Whether it’s health anxiety, social anxiety, loneliness or isolation…the need to relate and engage with our support and healthcare workers has never been greater or more critical…
…but it’s all time limited.
Failure to understand the changing health landscape is going to maintain or even worsen the burden the NHS faces. Interim services obviously have the potential to remove some pressure and start patients on their journey to recovery, but the way it’s managed and decisions concerning timeframes should surely be made on a case-by-case basis? Starting an intervention with someone who needs long-term treatments by telling them immediately that the help is here but only for a limited time is completely negating the point. Kindness, care, connection, listening and appropriate help are all critical, but complete recovery, returning to the community, becoming ‘normal’ again, requires TIME, not a quick shot of adrenaline and you’re fixed. For many of us this just won’t work long-term.
Personally, these interactions that start with an expiry date attached have only forced me to be more wary of anything else that’s suggested. Don’t get me wrong, I’ve found the experiences helpful, at some points even wonderful, but they’ve also been triggering. I’ve loved meeting people, I’ve loved building trust with them and letting them see the real me, I’ve let down my barriers to be my most vulnerable, shown the parts of me that I despise, even let them meet my child, then, suddenly…it’s over. Why did I open up in the first place? Nothing long-term has been achieved, and I’ve lost someone I liked and cared for.
Now my grief therapy includes some additional trauma. No joke – loss is something I struggle with immensely, for many reasons. Losing more people I like is just another adjustment I don’t have the ability to accept.
So, in conclusion, yes, I understand why the NHS is overrun, why these services are needed, and why they are being used so often. I see the help that’s possible through these services and the positive impact they can have on a temporary basis. However, the time limited issue is one I just can’t agree with, and I wish it could be rethought in a more compassionate and understanding way so isolated people have the opportunity to build positive and trusting relationships with support workers. Ultimately that gives the intervention the best chance of being successful.
Pressure on the NHS won’t change in the short term, so lets hope these organisations can evolve further to reduce the burden for everyone.
Thanks for reading.
Creative Steph 