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Advice from One Parent to Another When Seeking an ADHD Assessment for Your Child
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Early concerns

As a family, we had always wondered if our eldest son was neurodivergent. We picked up on a few early signs, but we were never certain, as we often thought his behaviour was typical of boys - especially one who had endured the challenges of COVID-19 lockdowns.

ADHD was first suggested as a possibility by my son’s teacher when he was six years old. He had trouble sitting still in the classroom, was easily distracted, found it difficult to follow instructions, and fidgeted often. He would also steal Blu-tack from classroom displays so that he had something to fiddle with!  

We also noticed similar challenges at home, with my son finding it difficult to concentrate on daily tasks, showing frequent hyperactive behaviour, and having difficulty with regulating his emotions. However, we could not pursue a formal diagnosis until he turned seven years old.

Making this stage easier:

  • During this time, I found it helpful to have an initial meeting with my son’s school. Together, we discussed his challenges at school and implemented some strategies to help him as we waited for a formal assessment. For instance, he was allowed to have fidget toys to play with in the classroom to channel his excess energy more productively.
  • I also wrote down as much information as I could about my son’s strengths, challenges, and neurodiverse traits so that I had these ready for the assessment process.

The assessment process

When we first started the screening and assessment journey, I felt relieved that we may finally get access to the appropriate support for my son and have a greater understanding of his daily needs. When filling out the initial screening questionnaire, I had much greater clarity about how my son's brain worked. With each recognisable statement, things became clearer.  

My child's school also filled out the screening questionnaire, and together, these results enabled us to pursue a formal assessment. During the next stage of my son's assessment, we provided greater detail about his childhood and developmental background, as well as the daily challenges and signs of ADHD that he faced. Receiving a diagnosis of ADHD has enabled us to put the support mechanisms into place that our son requires.

Tips for navigating this stage:

  • Be open and honest with the medical professionals conducting the assessment, and don't be afraid to ask questions or voice any concerns you may have.
  • Remember that you know your child best, and your input is invaluable in forming an accurate diagnosis and support plan.  
  • Find out as much as you can about ADHD and the assessment process. By staying informed, you will be better equipped to advocate for your child and make important decisions about their treatment.  
  • Be accurate and honest when filling out assessment questionnaires, and use past documentation, if required, to jog your memory about developmental milestones.
  • Speak to other parents who have been through a similar experience for practical and emotional support.  
  • Work closely with your child’s school during the assessment process. Keep the school updated on the progress and any diagnosis or support plans that are put into place.

Talking to your child about their ADHD assessment

Explaining the ADHD assessment process to my son proved challenging, but we had always felt that it was important to keep him fully informed along the way. We had a conversation with him about what was happening and used age-appropriate and neuroaffirming language. We focused on the strengths and positives of his characteristics rather than highlighting any perceived weaknesses.

Based on my experience, here are some practical tips to consider when talking to your child about their ADHD assessment:

  • Start by creating a safe and non-judgmental space for your child to talk to you about their thoughts and feelings.
  • Use simple and plain language to explain ADHD and the assessment process to your child. The language you use must be appropriate for the age of your child.  
  • Always use neuroaffirming language when speaking to your child, focusing on their strengths and abilities instead of talking about “symptoms” and “deficits.”
  • Encourage your child to ask any questions and express any concerns they may have about the ADHD assessment process, and practice active listening as they talk to you.
  • Remind your child that you are there to support them every step of the way and that they can always come to you with any questions or concerns.

In my experience, speaking to my son openly about his ADHD has enabled him to become an advocate for both himself and his neurodivergent peers!  

Final thoughts

Going through the ADHD assessment process has given me the opportunity to learn more about neurodivergence and the strengths and challenges that come with it. It has also helped me to better understand my son, and shown me how to adapt my parenting style to suit his unique needs. Remember that the assessment process is designed to help your child receive the support they need, so try to approach it with an open mind and a willingness to learn.

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What Happens After an Autism or ADHD Diagnosis Through Right to Choose?

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We are the only healthcare provider to provide this unique ongoing care. It includes psychoeducation workshops led by our clinical team, where you can learn more about your diagnosis, and where appropriate, the prescribing and titration of ADHD medication.  

This is all in line with our standards of excellence. By providing expert guidance, educational resources, and emotional support, we ensure that our clients can build on their strengths and access tailored recommendations about how they can make positive changes to their lives.

Post-diagnostic support with ProblemShared

One of the primary goals of our ongoing support at ProblemShared is to equip individuals and their families with knowledge about how neurodevelopmental conditions such as ADHD and autism can affect their experience of the world around them.

Psychoeducation workshops

Our psychoeducation workshops are facilitated by our expert post-diagnostic intervention (PDI) practitioners. They are virtual group sessions and combine the offering of information with opportunities to learn from and support each other. While participation is encouraged, it's your choice as to how much or little you would like to contribute. Our practitioners provide a safe, structured environment to allow opportunities for discussion, reflection and collaboration.

Over 4 sessions, we aim to help you understand your diagnosis and how it affects you, as well as how you can overcome any challenges you might face and build on your strengths. You will have the opportunity to listen to the lived experiences of others with the same diagnosis and share your own thoughts and feelings about neurodiversity.

ADHD medication: prescribing and titration

If you receive an ADHD diagnosis, our specialist ADHD nurse practitioners can prescribe medication where appropriate, which can then be dispensed by your local pharmacy. Note that this will only be possible if your GP has pre-agreed to accept shared care at the point of your referral (there is a section on shared care later in this article). We will also work with you to alter the dosage of your medications based on how you respond to the medication – a process known as titration.

Shared care

Once your titration period is stable, we will move you into a shared care arrangement with your NHS GP. They will take on the role of prescribing and monitoring your medications, and provide ongoing support for any challenges you might face as a result of your ADHD.

After receiving a diagnosis, we offer guidance about working directly with your GP to ensure they continue to prescribe your medication. If you have been diagnosed by one of our clinicians, they can begin to prescribe medication, support you through frequent reviews, and liaise with your primary care team to ensure joined up expert care.

Need more information?

If you have any questions about Right to Choose, our post-diagnostic care, the referral or assessment processes in general, you can head to the support resources section of our homepage, or explore our FAQs.

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How to Get a Right to Choose Referral from Your GP

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What is Right to Choose?  

If you are referred by your GP for specialist treatment, such as an ADHD or autism assessment, you have the legal right to choose which provider oversees your care, as long as you are a registered NHS patient in England.

If you suspect that you or someone close to you might have autism or ADHD, it can be difficult knowing where to start with seeking a diagnosis. The good news is that through the NHS Right to Choose scheme, your GP can refer you to ProblemShared for an assessment and ongoing support.  

This article will guide you through the process of asking your GP to refer you to our service.

The Right to Choose referral process, step by step

Firstly, you need to complete a self-report form. You will need to fill out the self-report form for your suspected neurodevelopmental condition. You should choose the self-report form that is relevant to your age:  

Autism self-report forms

  • AQ-10 for adults aged 16 and over
  • AQ-10 for children aged 12-15
  • AQ-10 for children aged 7-11

ADHD self-report forms

  • ASRS for adults aged 16 and over
  • SNAP-IV teacher and parent rating scale for children aged 7-15

If you are seeking an assessment for both autism and ADHD, you will need to complete two forms in total; one for autism, and one for ADHD.

All of our self-report forms can be found on our dedicated Right to Choose homepage.

Next, you need to speak to your GP. Get in touch with your GP and ask them to refer to you to the ProblemShared Right to Choose service. You will need to give your completed self-report form(s) to your GP before they can make the referral.

Then, wait for your GP to refer you. Your GP will now complete our digital referral process. You will receive an email when they have done so, asking you to provide some enrolment information.

Once you have provided the enrolment information, we will review your referral. If your referral is accepted, you will be notified by email and informed of the next steps in the assessment process.

Handling the conversation with your GP

The idea of advocating for yourself in medical spaces can be daunting. When the time comes to ask your GP to refer you for a neurodevelopmental assessment, it’s normal to feel a bit overwhelmed.

So that you can feel as prepared as possible, we’ve put together some tips on how to have the conversation with your GP:

  • Use our pre-formatted GP letter. It explains everything your GP needs to know about the NHS Right to Choose scheme, and includes instructions for how they should refer you to our service. It’s been designed specifically to answer common questions GPs might have about the process, and makes the communication as simple as possible.
  • Bring your completed self-report form. Make sure to give your completed self-report form to your GP when you ask to be referred, to avoid delays to the process. Feel free to bring other types of evidence which may demonstrate the challenges you have faced, such as a diary of symptoms.
  • Take your time. Your GP is there to facilitate your healthcare needs and listen to you. It's highly likely that they will have had similar conversations with other patients before. Don’t be afraid to ask your GP for exactly what you want.

What to do if your GP refuses your request

If your GP questions or refuses your request, this could be for several reasons, including the following:

  • They haven’t heard of the NHS Right to Choose scheme
  • They have concerns about funding  

In both cases your Right to Choose is not disqualified, and you can direct your GP to the NHS information on patient choice here.

There are, however, a few clinical reasons for refusal which are valid.  

Genuine exclusions

You do not have the legal Right to Choose if:

  • You are non-verbal and/or selectively mute
  • You are not fluent in English
  • You have a diagnosis of global development delay or a diagnosed intellectual disability (IQ below 70)
  • You are currently receiving treatment for an active eating disorder, and/or in active family-based therapy or eating disorder therapy
  • You are a person who is looked after, or under the guardianship of a local authority
  • You are currently receiving treatment for drug or alcohol addiction
  • You have experienced a current, or recently (within 3 months) resolved, psychotic episode
  • You have a significant visual or hearing impairment
  • You are undergoing safeguarding investigations
  • You currently have high levels of risk in terms of your behaviour and mental health
  • You require emergency treatment
  • You have already received care or treatment for the neurodevelopmental condition for which you are seeking an assessment
  • You are detained in a hospital under the Mental Health Act 1983, or on a Community Treatment order
  • You are seeking a second opinion assessment, and have already been assessed for autism within the last year (this does not apply to assessment for ADHD)
  • You do not have access to a laptop or computer (please note that an iPad which is at least 10” in size and can be propped up to be used handsfree can also be used to access our service, but handheld devices such as mobile phones cannot)
  • You do not have access to an internet connection in a private place
  • You or your child are not willing to conduct the assessment with your camera turned on for the duration of the assessment
  • You are currently serving a prison sentence, or are on temporary release
  • You serve in the armed forces
  • You have had a head injury, brain surgery, or have a neurological condition that has left you with significant cognitive impairments
  • You are unable to look after your self-care needs, or the needs of your dependants (e.g., washing, feeding, not taking prescribed medications)

Looking ahead

If you receive a diagnosis following your assessment with us, we offer a range of ongoing support options to our clients. We can prescribe medication where appropriate, and provide psychoeducation workshops where you can learn more about your diagnosis with our team of expert clinicians.

In the meantime, if you have any questions about Right to Choose, referral, or the assessment process in general, you can head to the support resources section of our homepage, or explore our FAQs.

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Inclusive Interviews: Best Practice

As neurodiversity becomes more recognised and understood within HR departments...
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One of the biggest barriers for neurodivergent people entering the workforce is non-inclusive interviews.Interviews typically place an emphasis on conversational ability, social skills and body language. neurodivergent candidates often show differences in these areas and so reasonable adjustments need to be considered to give them a fair chance so reasonable adjustments need to be considered to give them a fair chance.

Organisations can get ahead of the curve by adopting an inclusive approach to neurodiversity from the beginning. Here are some tips to help your company to conduct more inclusive interviews to support the neurodiverse workforce.

Before the interview

To help candidates prepare and set themselves up for success before the interview starts, here are some things to consider:

  • Provide clear directions to the interview, including photographs of streets and transport stations.
  • Provide clear instructions on how to get into the building and where they need to go when they arrive.
  • Share any interview questions in advance and allow them to bring reminder notes.
  • Allow adequate time for replies during the interview.
  • Let them know the name and job role of anyone they’ll be meeting during the interview beforehand.
  • Provide a timetable for what will happen in the interview. For example, ‘we’ll spend the first ten minutes talking about you, then spend ten minutes talking about your technical experience’.
  • If possible, provide access to a quiet space where your candidate can avoid auditory, visual, or social stimulation before and after the interview if required.
  • Ask your candidate if they’d like to be accompanied by someone they know during the interview.
  • Ask about communication preferences. Some people might prefer to support their spoken language with the option to write for example.

The right environment

Neurodivergent people often experience sensory issues. They may be distracted by noise, lights, and the surrounding environment, so if you’re hosting an in-person interview, it may be beneficial to ensure the interview room is as distraction-free as possible.

Here are some suggestions for getting the setting right:

  • Provide a notebook in case your candidate wants to make notes. This can help them organise their thoughts when giving detailed answers.
  • Invite them to move around during the interview, or factor in short breaks, if your candidate finds it difficult to sit still for periods of time.
  • Don’t expect eye contact. Neurodivergent individuals may find this uncomfortable, or it may impact their concentration.
  • If possible, provide fidget toys or stress balls to reassure your candidate by making them feel more comfortable and to reassure them that you are neuro-inclusive company.

Fair Questions

Neurodivergent candidates may struggle with open-ended and hypothetical questions, and with switching between formal and informal tones. It may also take them longer to process questions. Quick thinkers can talk rapidly and get distracted, so they may stray off topic.  

Here are some suggestions when preparing interview questions for neurodivergent candidates:

  • Be specific with your questions. For example, ‘what information governance processes did you use in your last job?’ may elicit a better response than, ‘what would you do to look after people’s data?’
  • Consider asking focused questions rather than generalised ones. For example, ask for specific examples instead of saying ‘can you give more detail?’  
  • Be prepared to accept literal responses. For example, if you ask, ‘how did you approach your last role?’ you may get a literal answer like, ‘by bus and then I walked.’
  • Try to avoid long questions that contain multiple clauses. Your candidate may have difficulty focusing and waiting for the question to be finished, especially if they struggle with processing information.
  • Multiple choice and psychometric tests can be discriminatory. It’s much more beneficial to provide an alternative style of assessment.
  • For written tasks at interview, 25% extra time is a reasonable accommodation to allow for processing and answering questions.
  • Be prepared to prompt your candidate or repeat your question if you need more information, and let them know when you have enough information.
  • Ask the candidate if they would like any reasonable adjustments for their interview.  

Considering neurodivergent jobseekers is a shift away from old-fashioned thinking, where the interview process was mainly designed with ‘neurotypical’ candidates in mind. It’s important to understand bias and be aware that we can all function in different ways, and that performance in an interview does not necessarily reflect on how a person will perform in the role.

To make sure you retain your neurodivergent talent it will be necessary to apply these principles throughout the onboarding and retainment process too. Make sure your workplace is neuro-inclusive by offering continued support from the beginning of their contracted time with you, as well as beforehand during the interview process. This should include additional support for the individual through any required assistive technology, workplace adjustments, and by making sure that all your staff are aware of and understandneurodiversity and have inclusive attitudes from the start.

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Understanding Anxiety in Autistic Children and Teenagers

The world for autistic children and teenagers can often feel like a very overwhelming place
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What is Anxiety?

Anxiety is a natural part of life and something that everyone experiences at some stage.  

Characterised by a feeling of mild or severe distress, anxiety is the emotional response to a detected of perceived danger. This creates an innate drive to enter protective mode, otherwise known as the ‘fight-or-flight’ or ‘freeze’ mode.

How Do Autistic Children Experience Anxiety?

Autistic children feel many of the same worries and fears as other children. Although the way they display their anxiety can look a lot like common characteristics of autism – such as stimming, obsessive, ritualistic and repetitive behaviour, and resistance to changes in routine and environment.

Autistic children often worry or feel stressed about things that are less worrying for typically developing children, like disruptions in their routine or unfamiliar social situations.  

They can also have trouble recognising their own anxious thoughts and feelings and can’t always tell you that they’re feeling anxious. Instead, you might notice an increase in changes in behaviour.

What are the Main Overwhelming Factors that Result in Anxiety for Children and Young People in Educational Settings?

Sensory Sensitivities

Autistic children may have varying degrees of sensory sensitivities to their environment especially when it comes to structured environments such as school or college. Loud noises, unpleasant smells and bright lights can be over whelming for them, often leading to exhaustion which can trigger further anxious feelings about their performance in the classroom.

Changes in routine

There are multiple transitions in a child’s day that could bring on anxiety, examples can include changing out of pyjamas into school uniform, changing classrooms frequently throughout the day and transitioning from work to leisure mode at break times and home-time.

Socialising

The pressures of fitting-in and being socially accepted can be challenging for a young autistic individual. Lack of structure in the playground and pressure to join in with small talk can make breaktimes the most dreaded part of the day.    

Autistic children are more vulnerable to bullying, often learning to mask at an early age in order to appear ‘normal’. This can cause extreme anxiety for anticipation of bullying and can in turn take its toll on mental health and well-being.  

Self esteem

Feelings of failure about not reaching expected norms and potential can have a very detrimental effect on an autistic child’s self-esteem and exasperate performance anxiety. Being told to ‘concentrate’, ‘try harder’ and ‘overcome challenges’, that are part of a child’s autistic identity can be a burden and effect feelings of self-worth.  

How Does Anxiety Manifest in Autistic Children and Teenagers?

Understanding and recognising how anxiety presents in autistic children and teenagers is a great step to identifying anxiety triggers in advance and in order to give support. Anxiety can be communicated through behaviour, such as:

  • Avoidance of tasks.  
  • School and/or activity refusal – this may come in the form of verbal refusal, refusing to get ready, excuses such as feeling ill, or becoming distressed when approaching the school gate.  
  • The need to have control - of routines, the environment and people around them. Higher levels of control can help the person feel a greater sense of certainty and predictability.
  • Obsessive, repetitive or intrusive thoughts also known as obsessive compulsive disorder (OCD).  
  • Repetitive self-stimulatory behaviour - hand movements, vocal noises, ticks, pacing or jumping around are important self-regulatory activities that can help soothe anxiety. It is important to be accepting of this behaviour even if it looks different to the norm.
  • Meltdowns – these can be a result of the amount of energy used throughout the day at school in order to appear normal and to hide any anxious feelings. These meltdowns typically occur on the return home and can be likened to a bottle of an extremely fizzy drink, which, once opened explodes.  
  • Shutdowns - when children turn their anxious energy inwards. The child may become withdrawn, passive, quiet or struggle to make decisions.  
  • Aggressive behaviour - autistic children may express their anxiety and fear through acting out physically. Aggressive behaviour becomes common when a child is in survival mode, doing their utmost to escape a scary trigger.  
  • Self-harming behaviour - self-injury can take many forms, such as hitting, scratching, biting or cutting.
  • Difficulty with concentration and a lack of readiness to learn new skills - when children don’t feel safe and secure it is hard for them to maintain focus on an activity.
  • Bedtime refusal - heightened stress hormones impede sleep hormones. In addition, stressful events can affect sleep by increasing the number of nightmares and night terrors.  
  • Separation anxiety - many autistic children form deep attachments to a caregiver, the separation from whom can often cause distress. In a school or nursery setting a child may feel less engaged than others due to being distracted by worrying about when their attachment figure will return.  
  • Eating disorders - especially in girls, anxiety can trigger eating issues often driven by a need for control. There are strong links between autism and anorexia. 

Recognising and Understanding Behaviour as Communication

It is important to recognise that self-regulatory behaviours are an autistic child’s way of trying to communicate, and that it is important to not reprimand your child for what may be perceived as ‘bad behaviour’.  

Behaviour is a form of communication and recognising and understanding your child’s unique way of communicating can help you to foresee and avoid difficult situations and triggers, and to enable your child to have an easier time in the classroom.

You can work with us and your child’s teachers to put in place any required reasonable adjustments to make sure their school day go as smoothy as possible. Our dedicated team can offer advice and support on how to communicate with schools and local authorities, and to help alleviate your child’s anxiety in the classroom.

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Neurodiversity and Executive Function

What are Executive Functions?
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When executive functioning is compromised, there can be challenges in planning, prioritisation, organisation, impulse control and staying on task.

What are Executive Function Challenges?

Everybody is different in their executive functioning strengths and challenges, and neurodivergent individuals can have very varied ‘spiky profiles’  

People may have challenges in relation to the following areas of executive functioning:

Initiation:

  • Getting going - especially when initiating uninteresting tasks. This is referred to as inertia
  • Procrastination - getting past thinking about the task to doing the task
  • Poor time management - not being able to foresee how long a task will take  
  • Thinking you need to do something but not remembering what it is.

Working memory:

  • Like a computer scratch disk - allows you to hold information in your mind while making links.
  • Challenges with short term memory - remembering what has just been said or remembering a sequence
  • Processing different streams of information - like listening to someone while remembering you need to remember your keys, for example.

Emotional and impulse control:

  • Not having internal prompts to remind you what task you need to do next, in order of importance  
  • Getting frustrated at yourself for forgetting to do important things, especially when others see you as lazy or incompetent  
  • Difficulties regulating alertness to complete hard tasks when the interesting parts have been done.
  • Finding it hard to shut off your busy brain which can affect sleep patterns
  • Experiencing RSD (Rejection Sensitive Dysphoria) which can be extremely debilitating  
  • Being impulsive and not considering the context  
  • Difficulty adjusting and graduating your pace, or changing gear. This can lead to an all or nothingmindset.

Focusing:

  • Challenges sustaining focus
  • Difficulties shifting from one task or topic to another  
  • Slower gaining information and losing focus easily

Hindsight and foresight:

  • Harder learning from past experiences and then repeating the same actions again and again
  • Difficulties with predicting future challenges

Time awareness:

This has been called “time blindness” by Psychiatrist Russell Barkley

  • Remembering to put appointments into your diary
  • Allocating the appropriate time to a task
  • Splitting a task into parts and recognizing how long each will take

Developing strategies to make everyday life easier

The good news is that once we recognise our executive function challenges, we can develop strategies that reduce the negative impact to help make everyday life easier.  

You may already have some personal strategies in place. Here are some that might be helpful if you haven’t already considered them:

Check your barometer  

Throughout the day check in with yourself. How are you coping? Do you need to take time out? Do you need a drink or something to eat? When we are tired, hungry or overloaded it can make it harder to manage new information or juggle multiple tasks.

Minimize clutter  

Make sure your workspace isn’t too distracting. Separate similar items into groups.  Use colour coding and visual prompts to help organise information on reminder charts or visual diaries.

Visualise and prioritise tasks

Use a wall-planner that visually highlights appointments, deadlines and daily tasks. Use colour coding to prioritise tasks. Create a list of actions at the beginning and end of each day and mark priorities. Carryover lists to the following day.

Take regular breaks

When in hyperfocus mode it can be difficult to remember to take a break which can lead to burnout, and if atask is uninteresting, it can be difficult to complete. Try the Pomodoro method to improve concentration. Work for 10 minutes then take a  5-minute break and increase the time if appropriate.  

Break down overwhelming tasks

If a task feels too big to handle break it down into small parts using the Kan Ban Method where you can break down large tasks visually into small parts, on post-its. Remember to congratulate yourself as you move forward, however small it is.

Make it more interesting

Try to automate ‘boring’ tasks and choose some pleasure stuff after more tedious tasks.

Increase dopamine levels

Choose some music that helps you to focus. Take regular breaks, you could even try dancing around if you feel stuck and try again.

Reminders and alarms

Use timers and set alarms to remind yourself when your deadlines are. Put all tasks and appointments into an electronic diary as soon as you know about them. Set reminders before the deadlines rather than at the deadline itself.

See the bigger picture

Try and gain an understanding of how all the different aspects of work link together in a  project or assignment. If you work as part of a team understand how your work links with others.

Supportive software

There are various types of software and apps that can help with planning, organisation and processing.

For example, Mind-mapping software, such as Inspiration and Mind Genius may be useful to map out ideas and workflow effectively or using text-to-speech and speech-to-text software could help speed up the processing of large documents.

Setting various reminders and alarms on your phone can be useful too. For things such as appointments, it can work well to set a reminder for the day before, then an hour before, giving you time to plan if necessary.

Be kind to yourself

It is not surprising that these differences can often impact on other factors such as self-esteem, energy levels and base level stress. Gaining an understanding of ourselves and the reasons why we find some things more difficult can really help in the management of this.  

Some days will be harder, or you will feel less motivated, and that’s ok. Practice your strategies and remember to always be kind to yourself and find what works for you.  

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Mourning Lost Rituals

Part 2: How can those grieving move forward?
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So how can those grieving move forward against the backdrop of this pandemic?

Models For Coping

Susan Cappaert, who has spent the better part of the last decade and a half working in a hospice and with bereaved people says that “The grief process is not a straight line, as you can imagine, and at times it’s like a rollercoaster, a wave of emotions, so I work through those waves with the client."

She uses integrative therapy for grief since it "is well suited because we don't work with a fixed ‘theory’ about how the therapy will work or what we will do. It helps me be more adaptable to working with the client, providing support they need at the time, rather than trying to get a theory to work.”

Alongside her private practice, Joyce Howitt has also volunteered for almost two decades at bereavement charity, Cruse where she is a supervisor to other therapists. She is an integrative and psychodynamic therapist.

"I find quite often when clients are looking for a way forward we can use a dual process where we work through the emotions of the bereavement while helping them to find a life for themselves on their own," Joyce Howitt says.

In more normal times, our usual routines can provide some continuum and some other place to go to be away from grief - they can be the conduit for re-entry to life after loss. Those grieving a loss, over which they had no control, get to exercise some control again in a reliably familiar setting. It stands as a bulwark against the turmoil of grief. But right now nothing is usual or routine, and there is no continuum save the "new normal" - which is far from normal and so there is no easy separation for learning coping methods.

However, now as we emerge from lockdown and our lives return incrementally to normal, various models for coping can begin to be integrated - these include the Dual Coping Model (Stroebe and Schut 1999), the Task Based Model (Worden 2008), Resilience theories developed by Bannon, and ideas of Post Traumatic Growth (PTG), albeit with the proviso that they need to adapt these to fit current circumstances.

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What Can We Do Now?

But in the short term, there are things we can consciously do in the privacy of our own company and our own homes to address some of the grief and suffering.

Conscious Actions And Personal Rituals

Private rituals which are expressed in a way that public outings of mourning are not proves more cathartic and ultimately more productive for moving through grief, according to well-received research in the last decade. It contrasted the role of public ritual in mourning with private and more personal or idiosyncratic rituals, such as the woman who continued to wash her husband's car on the same days as he used to do, long after he died even though she no longer drove - everyday motions that carry particular meaning and connection to the loved one.

Many who have lost someone they have mourned no doubt have a story of what matters to them, which memories are the most precious, and how they choose to remember that person.

Is this then a silver lining to a year when there is no access to the more public mourning rituals? That the solace we can find in doing things in private that bind us in memory to those who have departed is more helpful now than ever.

Susan Cappaert and Joyce Howitt recommend finding creative ways to do this even when rituals that might otherwise involve travel, easier access and social interaction were off the cards?

Memory boxes and journalling allow for commemoration. Physical and tangible belongings take on added importance in the absence of proper farewells. We also live in an age where the experience of our life is recorded and digitised but perhaps not catalogued nor made tactile - compiling an album which can be physically held and shared can be a more tangible expression of that life's record. Story telling is a powerful thing and well documented as a tool in therapy.

This commemorative approach ties in well with the movement away from certain counselling or therapy models around "letting go" of the deceased to instead finding an "ongoing" connection with that loved one, as pointed to in various research.

Focus On Self

The importance of experiencing nature or making time for mindful exercise, including the slower forms of walking or gardening are emphasised by both Joyce Howitt and Susan Cappaert - physical activity that is in the moment and which may allow some space away from other emotions.

Susan Cappaert also talks about the need for some quiet "me" time which offers both a meditative quality and also a sense of progress in making or finishing something - painting, photography, knitting. Hobbies old and new.

But equally important in this scenario are the routines of basic self-care; they are integral to coping.

It is important to stay the distance with this. Joyce Howitt sums up, “It's vital that those, especially those on their own at this time, are taking steps to look after themselves to help them avoid developing low moods,” she says.

Communication

Over the last year and more, where physical social interaction was rendered virtually null, it has been replaced by the "virtual" access of Zoom and other internet enabled communications. While zooming en-masse as a social catch-up or office-substitute has drawn its share of frustration and criticism, it's good to remember that the memes and lampooning in Zoom's wake (eg Zoom bingo scorecards) are testament to various human tendencies - inclination towards community and tendency to find humour in the foibles and follies of our communities, tendency to adapt quickly across the generations.

The only drawback here is that it can be harder for these new virtual communities to know how to support the bereaved - the setting is usually work-related, by and large functional and meeting oriented. As a setting that is unfamiliar in the context of grief, it may be less appealing as a place into which someone brings their own grief.

With the likely continued WFH - working from home - after Freedom Day on 19th July, the importance of how work places and office cultures adapt to engaging with and helping their people with grief and loss cannot be underestimated.

Howitt emphasises the importance of telephone calls and the human voice at the other end of the line. She highlights the initiative that friends and family should take here.

"Think instead of what you might do for someone who is bereaved than leave it to them to ask a favour of you."

That is even more imperative in times of lockdown when isolation can breed a tendency to become reclusive. And Resilience theory, which is often associated with an exclusive focus on someone's intrinsic nature as a key factor, in fact emphasises the equal importance of social support and bonding in finding that resilience.

Although we have been distanced from other people, we should not forget the value of our four legged friends too - “Pets can be such a great source of comfort in these times,” says Susan Cappaert.

Therapist As Middle Ground

Although family and friends are traditionally the closest networks for support, it’s common for support to fall away after a while, and even more likely in lockdown and as we emerge from it too, where people wish to make a clear break from what has gone before. And a person who is grieving might have uncomfortable or anti- social feelings about their bereavement so they may not choose to talk to those around them.

Seeing a therapist gives someone a regular window each week to talk about those feelings, and work through their grief without judgement and with support.

Susan Cappaert also points out that someone who has been through trauma might find they need to go over and over the event of the death itself before they begin the grieving process – something with which many family and friends may struggle to deal. "If the bereaved wants to go over the events with others, obviously that's putting that pain back into the room and others may not want to hear it.

As a therapist, I can sit with the bereaved and I can hear what they want to express as often as they want to tell it."

Bereavement Support In The Immediate Aftermath Of Loss

The national bereavement study referred to earlier has also made some interim recommendations which focus on areas of priority in what might better shape the response to this pandemic: improved communications, more flexible support bubble arrangements and a focus on those regions and NHS trusts where bereavement support is hampered by long waiting lists.

Another related study also acknowledged what the media reports attested to week in and week out during the height of the pandemic, that bereavement care is further impacted by the changed in hospital settings. Healthcare workers are under extreme stress in having to adapt to provide palliative care as well as primary clinical care with little training, less time and least energy, not to mention the disproportionate rate of bereavement withint their own work force because of their front-line exposure to the virus.

As reiterated in much research in this pandemic about Health Care Workers (HCW), "Special attention must be paid to HCW trainees, who may have not yet developed personal or professional grief management strategies and are coming into healthcare practice during a time of great disruption to both teaching and clinical care."

Future consideration needs to be given to tooling up healthcare workers with sufficient education around this for the benefit of the bereaved and for themselves on the front line.

The Nexus Between Prolonged Grief Disorder (PGD), PTSD And Therapy

"Notably"Notably, a key understanding about grief is that the quality of dying can predict complicated grief [also known as Prolonged Grief Disorder (PGD)]. The end-of-life experiences and the relationships of the person who died and their loved ones (what happens before death and as people face the end-of-life) appear to be as important or more important to the quality and outcome of grief than what is done after the death to console the bereaved."

Given the likely surge in PGD, therapists will be key to helping here. PGD should not be left untreated - it is well documented that it can lead to physical and cognitive impairment, and to more severe issues such as mental disorders including substance use and increased suicide risk, reduced quality of life, and premature mortality. (Research about the impact of PGD across the board is referenced in a publication that looked at the risk for older adults in this pandemic.)

It's also important to distinguish PGD from other ways that grief can manifest for example PTSD and depression.

This is why a trained therapist who specialises in grief in its myriad forms can be of real help. It allows for differentiation of treatment and response.

As one of the key researchers and academics in this field, Dr Holly Prigerson said about sufferers: “They’re getting treated for depression, and no one understands why they’re not able to move on."

Different Types Of Therapy And Treatment

Recognised modes of treatment specifically addressing PGD is in its infancy relatively speaking although as Joyce Howitt pointed out that as a condition, it has been more prevalent than people might imagine. Targeted approaches can vary from a broad flexible interpersonal psychotherapy like that practised by Susan Cappaert and Joyce Howitt to more targeted and defined models of intervention such as the Complicated Grief Treatment (CGT) and screening tools such as the Bereavement Challenges Scale.

Therapists will often use a combination of therapies and tools that align better with the individual's needs; some are specifically trained in therapies such as CBT and EMDR.

CGT includes elements drawn from both interpersonal pyschotherapy (IPT) and Cognitive Behavioural Therapy (CBT). Although CGT can be flexibly applied in clinical practice, the manualized form tested in research studies consists of 16 sessions, each approximately 45 to 60 minutes long. The Bereavement Challenges Scale developed by Dr Holly Prigerson, a leading researcher in this field, is a tool for measuring the challenges facing someone who is bereaved using a 35 item scaled index to assess this.

Treatment with various drugs (eg SSRIs) can be helpful but only to the extent that they are treating associated depression rather than PGD per se. (Drugs as an adjunct to therapy has been studiedpreviously against the backdrop of a reported deficit of research in this area.)

Some combine treatments with trauma therapy models such as Eye Movement Desensitisation and Reprocessing (EMDR), which, as the UK body explains,"aims to help the brain “unstick” and reprocess the memory properly so that it is no longer so intense. It also helps to desensitise the person to the emotional impact of the memory."

Words Are Hard To Find

The intensity of memories that flow from this pandemic are not just relevant to EMDR. A recent study that looked at thoughts, feeling and behaviour during disaster considered the “indescribability” of certain traumatic experience. This is an important factor in its own right as preventing people from taking the initial steps in moving forward. Talk therapy can be difficult in this context - emphasising again that imagery, drawings, body movement can and should be used by therapists in supporting someone so affected.

And it also points to the risk that the intensity of such feelings and memories are not given voice because of the weight of the hurdle in expressing it to others; it then goes unnoticed by others, and remains unresolved and buried for the the person so grieving.These risks have also been studied in other psychological work on dissociation. A grief therapist should be experienced in noticing such risks and exploring the grief experience to facilitate "opening up" in a supported framework.

Community Help For Grief

Some experts point out that a diagnosis of PGD can "pose the risk that grief becomes simply the province of specialists, rather than the responsibility of caring communities." This leads us to the matter of community and its key role in the healing process. Joyce Howitt says that lockdown has stopped vital therapeutic work of grieving groups and community initiatives - it has changed the scope for organisations such as Cruse. Although some of these have moved online, information around this and access can still be difficult.

So what else can we do as a community? What have others done before?

Collective Trauma - What Can We Learn From The Past?

The devastation of Hurricane Katrina and the Boxing Day Tsunami are among collective trauma events that have taught us much about how to frame community responses to bereavement and grief.

Reviews of all research to date on collective trauma could not be more timely. More needs to be written and spoken about the impact of this last year, and how to anticipate a properly supportive response at a national policy level. But research about other collective trauma events shows that certain factors are key and they are extracted below.

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And although Resilience theory continues to be debated, a key outcome of research here is that some social groups are more vulnerable to the harmful impact of collective traumatic events than others, which then impacts their ability to be resilient.

There is of course a defining difference to the source of collective trauma in these studies - that is, that the pandemic is not time limited or an "event" - it is ongoing and changing course. This creates a limbo-land which makes for a sort of delayed resolution to the "event" itself.

Making Sense And Reframing Our Grief

There is no comparable or recent frame of reference for this global lockdown and the loss of 2019 - 2021 although the spectre of the Spanish influenza of a hundred years ago or so looms large. A recent publication that draws on a body of research attests to the importance of ascribing meaning to death or loss, in terms of 'making sense' of it, in moving forward. This is as relevant for one who is in mourning as it is for society as a whole.

In a world that is now dominated by 24 hour access to information across a saturated but also fragmented media landscape, from the traditional outlets familiar to the older generation to the recent rise of social media favoured by millennials, we still await the sense or the story that our society through the media will make of this pandemic and its great loss. When will the time come to take stock, and what legacies for change and reflection will come from this as a society?

We Remember - Commemoration As A Society

For Mick Todd’s elderly mother, the very thought of shielding in lockdown was too much to bear. “I can’t go on like this until Christmas,” she told her son in the days before her death last April.

With a hint of Yorkshire humour, he says today: “She is out of pain now. She may have tried to get away from my dad and we can smile about that. I didn’t think it at the time, but now I see it [their passing] as a blessing for them both.”

Todd has since signed his Pontefract leisure club up as a Covid vaccination centre - catering to up to 400 patients daily - which keeps both his mind and body active.

He hopes one day in the future to be able to fully celebrate his family members’ lives. Charity leaders hoped that 23 March 2021, which was the anniversary of the first day of lockdown, would become in the future a national day of remembrance for all lives lost during this pandemic.

In the fog of loss and lockdown, dates for remembrance or milestones such as Freedom Day can stand out on an individual level as a point to allow those people, still waiting or in a kind of stasis, to take stock and for permission to grieve. At a national level, it can stand for the end of one cycle and the beginning of another - time for reflection and renewal; in the future it can represent our commemoration of those lives lost and a collective moment to mark the universal suffering in all its forms that came with this pandemic and our resilience as a society.

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