As a resident of Manchester, I was deeply affected by the bombing that happened at Manchester Arena in 2017.
I had attended concerts there and had even lived a five-minute walk from the venue for many years.
Since 9/11, the number of attacks like the Manchester event has increased as the world adjusts to modern times and civil unrest, and with the very recent attacks in Sri Lanka, more and more people are being directly affected by this seemingly unjust terror.
At the time of the Manchester bombing, I was working with an anxious 10-year-old girl, Abby, who had been adopted.
Abby struggled with the unpredictability of a ‘normal’ daily life, carrying her beloved snow leopard soft toy everywhere in a bid to feel safe. After the Manchester bombing, her mum contacted me to say that Abby had been very upset by the images she had seen and could I work with her on this. I was carrying my own pain about this event and I wasn’t sure how I could talk about this in order to help Abby feel safe.
Our natural human capacity for empathy becomes enhanced when you work therapeutically – or in a caring role – with vulnerable people. You contemplate the wider network of affect that disastrous events have on those involved, society and the world in general.
Being responsible for the positive wellbeing of someone, in work or in your family, often shines a different light on dramatic events as you think about the effect it could have them… on you. Protecting children from actual, physical danger is a natural instinct and this extends to the danger of emotional pain.
So how did I speak to Abby about what had happened and how can we do this with our own children, or in the therapy room? Here, I have compiled some suggestions to help with this.
- Keep it simple. Describing the event in general terms to a child is very useful. For example, “someone had gun and lots of people were hurt”. Using facts to break down the emotion whilst not complicating the event with language will help children think about the event within the context of their own experience.
- Acknowledge Emotions. Allow your child to talk about how they feel and help them to verbalise their emotions without ‘predicting’ them (your child may not feel anything negative as the event may be too far out of their experiences and this is fine, too). Spend ten minutes each day doing a quiet activity and offer them the chance to talk about their worries.
- Model your Behaviours. Your child will learn the most from how you recognise and deal with your feelings. If you can talk (again simply) about how you feel and offer examples of how you manage your emotions, your child will feel safe to express themselves whilst developing their own coping methods.
- Manage the Media. Of course, it would be impossible to shield your child completely from the effects of the media, and there are some arguments as to why this may be just as bad as too much exposure. However, as the adult, you can help the child feel safe by managing their access to photographs, news stories and opinions. This may mean watching the news after the child’s bedtime, checking the internet access of any electronic devices they may be using or asking other adults to be careful about what they say in front your child.
- It’s not an exact science. Speaking to your child about disasters does not follow a set conversational route. It’s ok to not explain everything or to admit that you don’t know why someone bombed a school. Use the language that is familiar to your family and allow time for questions.
- Listen and Reassure. Listening to your child without overwhelming them with more words is a great way to connect and help your child find their voice. Once they have finished speaking, remind them of all of the positive things in their own life and how safe they are right here and now.
If you or your child suffers from long term distress from any traumatic event, it could be worth trying some creative therapy, which focuses on the nonverbal elements of communication in a safe place. You can also try activities at home such as:
- Worry Dolls– put your worries in the doll and put her in the box,
- a Positive Pot– each day, write something lovely that has happened on a post-it and pop it in a pot. Read them back every few months or when your child is feeling sad,
- or having Worry Time– a ten minutes slot each day where you can write down all of your worries.
As for Abby, we used music to help us through the hurt of the bombing. At first, I talked to her about what had happened and admitted that I felt sad, like she was feeling. I listened to Abby’s questions, acknowledging the difficult moral dilemmas and when I did not know the answers.
Abby also composed a song about her worries and fears and left the song with me each week so that I could keep it safe. We sang it every week for a while and then it changed. Abby composed a new song about her friends and their new favourite game. One of my most comforting thoughts is always, “this too will pass”.
‘Don’t be alone, don’t be too proud to reach out for help’
After Vasili Kalisperas was born a healthy baby, his jaundice was left undetected by midwives and led to him being left with cerebral palsy and needing round-the-clock care. Here, his mum Elena discusses the huge mental health challenges of being a parent in such a position and how she learned to admit it’s OK not to be OK
I’ve always been a very optimistic and positive person, which I do think helps during such traumatic times, but that’s definitely not to say it hasn’t been a struggle. As equipped as you might be in terms of your outlook on life to deal with challenges, when something so traumatic happens to you, it is of course going to be a struggle to come to terms with that.
No-one tells you how to cope, you can never prepare yourself for something like this. There is no right or wrong way to do things and you can only get through it as best you can.
My husband and I dealt with things so differently in the early days. He found comfort in talking about what had happened to Vasili, by sharing a lot of information on social media, whereas for me I was more introvert, I didn’t want to do that.
I was diagnosed with PTSD, which stemmed from the fact our situation was so completely preventable. I became fixated with Vasili still being in the womb, when things were still fine, and I so desperately wanted to find a way to turn back time. I had a water birth with Vasili, and every time I had a bath I’d be in there for hours crying, reliving the whole experience of giving birth to him, feeling the exact pains I felt.
My husband made sure I was cared for and was OK, but finding help was hard. I did try and get medical help but the waiting list was huge. I waited for over a year to see a therapist but I didn’t find it helpful – she wasn’t trained in my needs and was a general counsellor, so I didn’t get anywhere. I was then referred somewhere else, but that was in the same place I had my check ups when I was expecting Vasili, and that in itself was too traumatic.
After being bounced around for a couple of years, eventually, I went privately and found an amazing therapist. It does take a huge amount of time and energy to relive the experience, but I found that opening up and talking about how I felt was so important. I also discovered EMDR therapy through these sessions, which was fantastic and really helped me so much. I realised how far I had come through taking that decision to open up and look for support.
If you have a support network around you, then that can be vital in times of trauma. Even if friends don’t know quite what to say, the fact that they’ll listen can be so valuable. My mum and sister were always there, anytime I needed anything. There were times when no-one could say the right thing, no-one could fix what had happened, but just being able to talk and cry and share what I was going through helped me so much. You need to allow yourself time to grieve, as it really is a grieving process.
In society, while things have thankfully changed massively in recent years, there is still a feeling for many people that showing emotions is a sign of weakness. There is still a stigma in admitting you’re struggling with your mental health, but I see that it’s like your physical health – you’re never going to breeze through life without any problems at all, it’s going to happen to us all at some point. No-one should ever be afraid to admit they’re struggling and they need support.
Lockdown has been difficult for us all, and seeing the impact on the children and my oldest daughter in particular, has been awful. She is in high school and not being able to leave the house has had a big impact on her mental health. But as a family, we share our feelings and talk about it, and I teach my children the importance of positivity and an optimistic outlook to help them cope with challenges.
In learning to deal with what you face and move on with your life, you need to accept it and forgive yourself by recognising it isn’t your fault. It has been a long journey for me – Vasili will be nine in May – but we’ve made so much progress.
While Vasili and our other children are of course our priority, I’ve learnt the importance of making time for self love and care. Without making time for that, you’ll run yourself into the ground. For the last two-and-a-half years, the children have been at school every day, which has meant I’ve had time to take control of my mental and physical health. I started doing daily exercise, which began by making sure I got out to walk every day, and I now regularly go to the gym. It’s a big release for me.
I’ve also reached a place where I’m able to look to the future and I’ve started my own business as a hairdresser, working from home in a salon we’ve created in an outbuilding. Being a hairdresser gives me a chance to help other people to open up and discuss anything that’s on their mind, which for many people may be the only chance they have to do that. And also, I’m training to be a personal trainer – I’m already a mental health first aider, and I’ve seen for myself the impact that exercise can have during the most trying times, so I think the combination of mental and physical wellbeing support is so important and I’d love to help people with those.
For me, in being able to find acceptance of our situation, I’ve been able to move on and find time for myself and what I want to do with my life. I’ve definitely found my purpose, both as a mum and as a woman, and I’m in a much better place now. But without having the strength to open up, to reach out and admit I needed some help, I don’t think I’d have reached this point in my journey.
The one thing I’d say to people who are struggling, whatever their situation or circumstances, is to talk. Don’t be alone, don’t be too proud, and reach out to someone. I’m so pleased I did.
‘I’m a rehab professional attempting to rehab myself’
Having contracted COVID-19, which has now become Long COVID, assistant neuropsychologist Alarna continues to battle a number of effects, including fatigue. Here, she shares her reflections on her experience, which has enabled her to gain a greater understanding of her patients’ wish to return to their ‘normal selves’
My name is Alarna, and I am an assistant neuropsychologist at a specialist private neuro rehab hospital. I have worked in both supported living and rehabilitation settings for the past 14 years, with various mental health conditions, psychologically rooted illnesses, degenerative diseases, and rare neurological presentations.
Today in discussion with our company director responding to the question of “How are you?” I found that I had reached a new level of understanding for every patient that I had worked with. I found on some level I could identify with their journey as I am attempting to rehab myself. I answered, “I just want to get back to my normal self”.
In December 2020, I tested positive for the coronavirus and was severely unwell for a period of 2-3 weeks. I initially was unaware that what I was experiencing was anything other than being run down or having a common cold. It was not until day four when I woke up feeling as though someone was sitting on my chest, each time I moved I had to take shallow rapid breaths to remain upright and when I coughed it felt as though I was being punched with weighted gloves from all angles.
This was unlike anything I had experienced in my life. Being someone who would be over a cold within 3-4 days (and very ironically did not know how to properly rest) the situation was entirely foreign to me.
Having thankfully recovered some weeks later I began to find myself falling asleep involuntarily every 2-3 hours, I was still breathless on exertion (from walking up a flight of stairs to carrying a handbag) and generally feeling weak. After seeking advice from NHS 111 I was reassured that this was to be expected following a virus and should subside in a week or so.
Throughout this period, I had regular contact with my supervisors at work who were (and still are) extremely supportive, reassuring, and understanding. It was not until several weeks later that we discussed an action plan to help me ease my way back in to work.
This brings me back to today, four months after having COVID-19 and still suffering with chronic fatigue, occasional breathlessness, and migraines. I am unable to complete a full day at work and once I get home at approximately 3:30pm I have no choice but to stop everything and sleep.
Just a key point I would like to throw in here. Fatigue is not the same as being tired!!
I have been burnt out before, I have been exhausted, and I have been tired, but this unexplainable experience is not like any of the aforementioned. It is like an involuntary shut down. People who mean well advise me to just rest or sleep more not realising that I am sleeping up to 14 hours most days and still waking up feeling exhausted.
In my attempts to help the process along I have completely changed my diet, dropped 20lbs of excess fat, complied with resting when my body tells me to, and my energy levels remain poor. Some days it feels as though my speech is unnaturally slow and slurry, though when asking my colleagues, it is not so for the listener. In summary I cannot function without having a 2–3-hour nap in the early afternoon as well as a full night of sleep.
Though there are so many unknowns with this virus, from my experience I have learnt the following:
– The importance of self-care and rest. Sometimes in the busyness of life what we think we are doing to take care of ourselves really is not self-care.
– To appreciate the stillness and tranquillity of silence
– Spending time alone and reflecting is so peaceful.
– Your health is one of the most important things you have and needs to be a priority. Facts that I knew before but like so many, have taken for granted.
Personally, as a woman of faith I believe that this situation has and will work out for my good in the end, there is always a lesson or a positive to be taken from every experience. This has also fuelled my ever-burning desire to be instrumental in changing lives for the better, starting with my own.
This situation is only temporary but for many of my patients it is not and returning to their former self is a distant memory not to be realised.
I take this opportunity to thank my incredible supervisor/mentor at Renovo Care, Dr Anita Rose, and Margreet, as well as my amazing colleagues Ana, Chris, and Simone for being so caring and supportive during this difficult time.
Rest in peace to all of those who have lost their lives because of this horrible virus, including my dear Grandpa. May we find and be the solution! Stay safe.
A rehab professional attempting to rehab herself.
‘This isn’t a threat – it’s an opportunity for revolutionary change’
Writing for HT World, Brian O’Shea, continuing healthcare advisor at the Spinal Injuries Association, urges commissioners to embrace change for the good of the patient.
As a service user and patient advocate, I believe it’s important to always consider the patient perspective of going through the NHS Continuing Healthcare (CHC) process.
I think it’s important to recognise that when people encounter the CHC or local authority assessment process, it is more often than not the first time that they’ve engaged with the health and social care system.
This usually results in an overwhelming experience for patients, or their carers, as they have so many questions about the process.
It can therefore appear to CCG or CHC advisors that patient questions don’t really arise in a logical flow or sequence. They will often ask questions as they emerge in their minds, for example, “How does this thing work and how can I make sure my voice is heard?
What’s happened so far in the process? What happens next?” However, the most frequently asked question about the process is, “Who can I speak to?”
It is really important to think of this experience not only from the individual patient’s perspective but also from anyone who is working with them to get through it, whether that is an advocacy organisation such as SIA or simply an interested relative.
Quite often when a patient or their relative contacts us, we start to ask them what we think are simple questions: Where are you? Have you had a check list done?
Have you had a referral made? However, as it is often their first experience dealing with the health and social care system, they just don’t know the answers.
Using a patient portal
Previous NHS CHC improvement initiatives have focused on answering this question by allocating a case worker to take individuals through the end-to-end NHS CHC process.
However, we know that this falls down because the individuals managing the process leave the NHS organisation handling the individual’s application, or there is a change in the contact details of the CCG etc.
And there are many more factors and variables that can disrupt the communications between the individual and the CCG, leaving the individual in the maze or even worse, just in the void.
And so, I think digitisation in this area of healthcare delivery is tremendously exciting.
I think that, through the trials of the last year, we have seen how empowering the move over to digitisation can be across the whole of the health and social care sector – when it is done properly.
In this spirit I see a patient portal as a potential solution to many of the questions the CHC process brings up for both patients and CCGs.
We once asked as an industry, “How do you address the issue of having a dedicated individual to take the patient through the assessment and care plan process from end-to-end?”
Well, the answer may just be that you don’t actually need an individual to take the patient through the process, maybe that can be achieved by a digital platform.
There is also a growing awareness amongst patients of the amount of personal information the NHS holds.
I think that one of the advantages of the patient portal on the digital platform, particularly demonstrated in the Digital CHC by IEG4, is that the CCG can make the data more transparent to patients and families.
Sharing the assessment information and the discussions from the MDT meeting builds trust in the process and ensures that patients and families are at the heart of the CHC decisions.
However, having a patient portal is not necessarily throwing open the doors and having absolutely no control of the information between the patient and the heart of the NHS. It is more about understanding the information that an individual needs to generate trust in the NHS CHC assessment process.
As advocates we recognise that, for some patients, if you gave them access to everything it could be just as overwhelming as not giving access to any information. So, it is important for the CCG to build flexibility into their digital platform and strike the appropriate balance for each individual patient.
An additional advantage with a digital platform, is that you don’t have to wait for 9-5 office hours to get an answer to your questions, you can access the information yourself at a time to suit you.
The platform can answer the questions of who has already been involved and who is going to be involved, what the next steps are, and it can also keep track of what’s already been done. No chasing telephone calls taking up time of health and care professionals and an ability for patients and family members to take control.
The Future’s bright, the future’s digital
The path to the digitisation of healthcare services has not been straight forward, and there is still some work to be done in ensuring that safety sits atop the agendas of CCGs when it comes to its adoption, however seeing how platforms like IEG4 take steps to improve this is encouraging.
Both as a patient and as a patient advocate, I cannot tell you how excited I am about the move to digitisation of Continuing Healthcare.
I honestly think it has the potential to be revolutionary. I think that when used appropriately by CCGs it could be a revolutionary step forward in the quality of decisions made, in the amount of time that it takes to make decisions and it has the potential to be revolutionary for the individual patient experience of the NHS CHC assessment process.
I would really encourage CCGs and local authorities not to see it as a threat. To me it is just such a great opportunity and I think it is really pivotal in changing how we engage with Continuing Healthcare.
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