‘The Heart Sink Patient’ introduces ‘The Heart Sink Professional a powerful combination of words………

 

A dear Twitter friend a trained SRN, reminded me of a term I once heard a few years ago but had not thought anymore of.  Thank you Liz whose determination and tenacity is the inspiration for this blog,  Liz, you know who you are x.

There is a little known term not known by many members of the public but used by doctors which works as shorthand for flagging a difficult, demanding and perhaps ‘expert’ patient who doesn’t particularly like doctors but regardless  continues relentlessly to make very regular appearances at the doctors surgery with ailment after ailment always appearing to be in search of endless diagnosis.  This shorthand is known as the ‘Heart Sink Patient’.

As I understand it there are two types of ‘heart sink’ patients.  The first is the one who has a terminal disease or condition for which the doctor feels totally helpless and can only assist to enable that patient as much comfort as possible or to die.  They describe those moments as heart sink patients, moments of sadness.

The definition of the second type is not quite so benign and is  known as the endlessly ‘demanding’ patients…. the ones that when doctors see them on their lists makes their “heart sink” quite literally.  These ‘demanding’ ‘dysfunctional’ and ‘difficult patients are said to make doctors feel negative, anxious, helpless, angry and stressed. I am 99.99% certain that I carry this label …big sigh, yet another one to add to the list……but …it rung a lot of bells in my head as I recognise the signs in many professionals too!  Works both ways!

Hence for the last few weeks I have been searching the net to find the term ‘HEART SINK PROFESSIONAL’ but it doesn’t appear to exist so whilst I make no claims I do believe that this blog could be one of the first times this term has ever been used in this context.

My term ‘Heart Sink Professional’ is not just confined to just medical professionals and doctors but to ALL professionals whether they be within Social Services, Criminal Justice, Job Centre, Local Authority or Education.. it cuts both ways and it lit my brain up as I suddenly realised that this was a phrase that could potentially empower me without penalising me.  I decided to put my newly formed phrase to the test at the next opportunity.

Recently on a regular (one of many) visits to my Consultant Gastroenterologist I calmly told him that I didn’t want to be seen or known as a ‘heart sink’ patient because I didn’t see him as a ‘heart sink professional’.  He moved his chair back slightly aghast, shocked that I had uttered those two sacred words, it was like I had exposed a secret!…..”Errm no I don’t see you like that Debi….and I am very relieved you don’t see me like that either”.  He carried on with the consultation for another 5 minutes when out of the blue he stuck his glasses on the top of his head and said “Debi, is Dr Brown (colleague of his,name changed) a ‘heart sink’ professional?”.  Caught slightly off guard  I hesitated for 2 seconds and replied “Yes which is why I insist on seeing you”. He acknowledged my reply with a disappointed but almost resigned look and nodded his head.  At that moment I immediately felt  a stronger connection and a sense of mutual respect. An equal.  This one phrase is continuing to change my life in so many ways.

The Autism Spectrum, Neurodiversity is a mysterious hidden world to most medical professionals, they don’t understand it, they don’t know much about it and they aren’t trained in it…hence they have no idea what to do and end up feeling vulnerable and out of their comfort zones with a frustrated patient often  having the ‘upper hand’ in knowledge.  What does a doctor do when faced with an issue they are not expert in?  Refer to someone else?  But who? ….another professional who doesn’t know…but knows someone who might and so on.  The cyclical abuse continues…..for seemingly ever.  The ‘label’signal/diagnosis’ we search for confirmation of is just replaced with another easier one ‘heart sink’ patient.  Cruel cop out.

I know many others who would also reluctantly admit to probably being labelled a ‘heart sink patient’. I am far from alone.  Invisible difference combined with a desperate need/right and desire for an identity, explanation and acceptance can and often does result in the label ‘heart sink patient’. Double whammy that many on the autism spectrum, neurodiverse with invisible difference actually go into meltdown at the thought of going to a professional. Its a huge effort to go to only to have all that dismissed as we are made to feel a troublemaker. Blamed for being ‘different’.

I seem to have spent half my life in the GP’s surgery or various hospital ward and consulting rooms, me + 5 kids!   I get that I am not the easiest patient/parent in the world I fight my corner and stick up for my kids…..however considering the fact that we have been passed from one department to another like a game of musical chairs…I have lost count of the years I have spent trawling me and my kids to different departments for answers to questions, understanding and a little support. Having to  repeat myself endlessly to the point where even I can’t bear to hear my own voice!  Doesn’t help that I am a trained nurse with an inquisitive mind and perhaps too much knowledge for comfort. Professionals don’t like to be challenged!

How many ‘heart sink’ professionals have my family met?  Too many to count and I wish in hindsight, I could have told them how I felt and shout YOU are a heart sink professional .and YES I DO hear the sigh from the ‘professional’ as I enter the room, I DO notice when they roll their eyes in despair, hunch their shoulders and look at the floor and yes I even hear the mutter or the even deeper sigh when I am closing the door behind me.  I see you! I hear you, I get it BUT you don’t hear or see me.   Professionals don’t realise or don’t believe that someone who is ‘actually autistic’ can ‘feel’ these things let alone be aware of them!  Another myth busted, yes we can!   Being overly sensitive as many of us are,  I pick up on the slightest of change in atmosphere and environment.   I’m like a human barometer, its a gut visceral thing.  When an appointment goes well I feel it however more often than not when it doesn’t go well  I leave frustrated, misunderstood and angry whilst the professional is left slumped in their seat requiring a strong drink and a holiday!

I have always been accused of searching for ‘labels’, it infuriates me as I insist their definition of  the word ‘label’ is my definition of the word ‘signal’. However that aside  it seems ironic that doctors insist on blaming and punishing us for looking for a ‘label’ but give us one to suit themselves, regardless.   Perhaps it is the doctors who have the problems adding to the endless ‘list of labels’?

So are you a heart sink patient?  Perhaps you are a heart sink parent? Heart sink family? I am pretty sure I would tick all those boxes……but that doesn’t mean I am proud of it, on the contrary I am horrified and hurt.  I am many things but I am not a liar or a masochist.  Endless appointments, wasted time dragging my poor kids to endless experts who actually weren’t expert at all was in my opinion abuse in itself.   We don’t enjoy sitting in waiting rooms saying the same ol same ol…..its not a pleasurable pastime and not one I would recommend although some professionals would have you believe different.  It was and still is for many a living nightmare as they fight systems set up to fail them who in turn label them as a troublemaker and a causation for stress and anxiety in the workplace. Blaming and labelling heart sink patients helps who?

You only get one life right?  Time is short enough without having to spend the majority of it fighting to claim an ‘officially’ recognised identity.  Do Neurotypical people get a free certificate of existence recognition at birth? If so where is mine to say I exist in my own right as Neurodiverse?  I am not ‘mad’ ‘bad’ or ‘needy’ I just wanted to know who I was…that way I could help my children find out who they are too. Its that simple. A simple basic human right … identity.

So next time you visit a professional …just mention the words ‘heart sink’ and watch for their reaction. Are they a heart sink professional?   Tell them gently and kindly how you feel because its all subjective and only you know the answer to that question. I am planning a trip to my GP hurray!  Weather nice for a jaunt to a depressingly awful waiting room, must remember my packed lunch and camera…such a treat…GROAN. I will make sure I blog his reaction when I mention the words ‘Heart Sink Professional’ maybe it will make his heart sink twice in one appointment! Watch this space.

The search for Autopia and Auquality goes on ……….

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3080217/

 

 

Autism Champion Norman Lamb MP

Little under a week , quiet reflection on the tragic, needless, cruel and heinous loss of Jo Cox MP has left my autistic brain not just numb but reflecting on the autism campaigners that I have met and had the privilege of working with. The ‘Autism Champions’ that continue campaigning for us every day of the week.

If only Jo knew how many people loved her, wished her well and thanked her for standing up for them, she would be so proud and humbled as her family clearly are. I wished I had the opportunity of thanking her, hindsight is a wonderful thing. Lesson learned.  It was very moving watching MP’s from all sides wearing a single white rose paying tribute to a wonderful campaigner, mother and human being today, in Westminster.  As I watched it reminded me of the famous 1914 World War Christmas Day truce where just for one day everyone sung from the same hymn sheet, quite literally. Oh how I wish we had more ‘today’s’…harmony, respect and good old fashioned TLC.

With that in mind I felt that I had to publicly and openly thank Norman Lamb MP who when he was Minster of State for Community and Social Care,  Chair of the Autism Programme Board (APB) made and continues as an MP to make huge contributions to autism that many people don’t even probably know about or are even aware of.

Gut feeling for many people on the autism spectrum is often really strong. I am no different in that respect.   Most people on the autism spectrum know in a heartbeat if they are going to ‘get on’ or even ‘like’ a person.  My gut feeling immediately I met Norman, sung  ‘kindness’ to me.  I never saw him as imposing or scary (some senior politicians can be a bit intimidating),  Norman’s gentle tone of voice, kind eyes, non threatening body language and ‘real’ interest in autism resonated with all 4 autism advocates unanimously and instantly we all liked and respected him hugely. You know when you just know that someone ‘gets’ you?  That automatic gut visceral feeling that shouts YES this person is REAL, he is genuine, he is listening and CAN make a difference!  That is how I felt when I met Norman….and he didn’t and hasn’t ever proved me wrong.

Norman doesn’t just listen to ‘real’ autistic people like me, he HEARS us too… he takes in every detail, remembering every name, soaking in the information and acting upon it.  As Care Minister he was a breath of fresh air, at last optimism for the future, how I wish he still was. I cried when we lost him in the General Election of 2015.

Regardless of political party or persuasion I tend to hone in on the people who champion causes that I am passionate in. I don’t discriminate between Labour, Conservative, Liberal Democrats or any other party.  If that person is passionate about autism,  well intentioned and kind then that’s good enough for me, they have my vote.  But Norman is more than that, he is a gentleman of politics and passionate about making a difference.  Norman chose to listen to us the ‘experts by experience’, he gave us the lion’s share of time always willing to speak to us individually privately if we so requested, yes sure we had to make an appointment but we always got his time. He never let us down.

As we have clearly learned (sadly the hard way), sometimes we forget to thank those who put their lives on the line to speak up for people like me and many others. Sometimes we critic more than we  praise and sometimes we just simply don’t care.  When Norman was Care Minister, he literally did ‘care’,  he did more for autism than any other Government Minister ever has in my humble opinion.  We were getting somewhere when he was office, at last we were being listened to….but then we lost him as our Minister in 2015 General Election. I cried.

Norman always described our meetings at Board Level as a ‘train wreck’, he was meant to be strictly Chairing a tightly packed agenda,  but always got sidetracked because he listened…intently to US the advocates, the ‘actual autistics’.  A meeting full of acronyms and long waffly policy came second to Norman who was far more interested in listening to everyday experiences that people with autism face on the ground everyday, only then could he attempt to put wrongs right. I can be quite ‘gobby’ in meetings, I challenge many professionals, some misinterpret my enthusiasm and passion for autism (my special interest) as ‘disruption’ ‘attention seeking’ but Norman ‘got me’, he ‘gets’ autism.

Norman campaigns daily for those that don’t have a strong voice, those who struggle to make their voices heard or who have difficulty sticking up for themselves. Those from the LBGT communities, invisible communities such as autism and those with mental health illness’plus many more.  Fearlessly he often goes where ‘other politicians fear or refuse to tread’ and  will campaign on issues that many others don’t even acknowledge such as The Cannibis Bill where he desperately hopes to be able to “start an open and mature discussion about the UK’s drugs laws”. He operates on kindness and ooodles of good old fashioned common sense (gosh please can we have more).

Norman has experienced first hand the failings of our overwhelmed, antiquated systems that appear to do many more damage than good. He has spoken out of his own son Archie’s struggle to get support and help for a mental health condition and of other members of his family also with mental health illness whose lives have been tragically cut short.   That makes Norman a very powerful and credible advocate and expert by experience for all of us.  These raw real life experiences have also by his own admission, driven his determination even more to ‘push for change. I hope our newest autism champion John McDonnell Shadow Chancellor works cross party with Norman to effect the changes we so desperately need.  Together they will and can make a formidable team.

Although I am not one of Norman’s constituents I hear from them via social media.  He is a very much loved MP,  humble, honest, compassionate and kind.  He attends local events, joins in, gets his hands ‘dirty’ with everyone else and contributes to many worthwhile causes learning every step of the way. To Norman, every experience is a learning experience.   North Norfolk have every reason to be proud of their MP and for the record there are many more like me from all around the UK, equally as proud to know him.

In order for people like Norman to help us, it is up to us to help them.  Who cares what colour  badge they wear, I don’t but what I do care about is looking after those who look after us.   Stay safe Norman, your work is hugely appreciated and we are so lucky to have you.  Just wanted you to know,  you do and are making a difference.  Thank you.

 

 

 

Jo Cox MP Autism Champion

Seems only appropriate today of all day’s to blog about Autism Champions, the people who speak up and passionately campaign for what they believe in, those who never give up. My blog is dedicated to Jo Cox MP.

Two youngsters went to school this morning and mummy went to work because she cared about others with every morsel of her being. Tonight those two children will have to live the rest of their lives without mummy. A whole entire family has been destroyed in a heartbeat. Today is not for blame, today is for thanks and quiet reflection. Today is for her precious family who cannot comprehend how in a few seconds their lives could change forever.

One day Jo’s children will search the internet and perhaps feel consoled in some tiny way to read stories and reports about what their mummy achieved in her relatively short life.
Jo stood up for the vulnerable, those with difference. She embraced diversity and had a smile and kind word for everyone. I never had the pleasure of meeting her but from all accounts there wasn’t a bad bone in her body, she was greatly respected, loved and liked. A tour de force, passionate in her beliefs.She was a breath of fresh air in Westminster and she shone every time she spoke.

Jo embraced and campaigned for the autism community. She challenged the needless suffering of people on the autism spectrum who waited endlessly for a diagnostic assessment. She “got” autism, she understood what it meant in everyday terms.  She was a keen lobbyist and spoke openly about her concerns of failures in a system that continues to fail most of us.

I could write endlessly of her contributions to the autism community. I will keep it brief to respect grief.

Jo Cox was a ‘warrior’ for those that needed a voice. She cared for people, she embraced life and hated no one. She stood up for us when no one else would. She was remarkable and her legacy will never be forgotten.  As a tribute to her we must continue to stand up for ourselves, believe in ourselves and stand united in our quest for a world that understands us.  We must follow her example and continue to tell her precious children and family how grateful we all were and how we will never let her down. Her campaigns will continue burning even brighter than before.

From the bottom of my autistic heart Jo and on behalf of many others within the autism community, thank you for standing up for us and giving us a voice. You will be hugely missed but never forgotten.

To her family….thank you for sharing Jo with us, thank you so much.

Finally as a mum ……

Dear Jo’s children. Your mum was amazing, genetics are powerful and you are just as amazing  Your mummy was a happy, beautiful caring woman, she loved life and was passionate about what she believed in. She will always be watching over you urging you to fight for what you believe in too. And you will, because genetics are powerful. x

 

 

 

Busting a few myths Autism

Scaremongering tactics, urban myths and wrong information has scared and worried many parents and people with autism. sadly in 2016 finding a professional who understands and is trained in Autism Spectrum Conditions (ASC) and ADHD is still a lottery and a bit like looking for a needle in a haystack.  Let’s look at the reality of what someone with a diagnosis of ADHD or ASC has had to go through before finally getting their long awaited diagnosis.

The diagnostic pathway is enough to put anyone off seeking a diagnosis forever. So what is the attraction about ‘getting diagnosed on the autism spectrum’? Most people with a diagnosis of Autism Spectrum or ADHD will have had to attend between 2-6 appointments and assessments in their quest for their identity and that’s only if you get ON the waiting list in the first place you are never guaranteed, its not an automatic right of passage, there are a lot of questions and blind alleys to walk down first!  Many will have waited years, I waited 54!  Most by now are tired, exhausted and weary of being passed round in a never ending wicker basket from one professionals to another only to have to repeat their story again…and again ….and again…..and again…

Autism Spectrum Conditions (ASC) and ADHD are differences that most people feel from a very early age but most don’t know why they feel different. Struggling to understand who you are is very life limiting. Everyone has the right to an identity and people on the autism spectrum are no different. No we are NOT all rainman neither do we spend hours rocking in a corner. Most of us look normal whatever that is, many of us even drive! Believe it or not, someone said to me “how can you be autistic you can drive!”.  When I tell people who I am I get proper cheesed off when they don’t believe me because I don’t look or sound autistic!  Took me a long time to find out who I am, I am out and proud!

Invisible difference is often the cruellest difference of all since many doubt its existence. Why go to the fuss of walking down a frail, bumpy and cruel diagnostic pathway that is filled with potholes and mines? People on the spectrum and that have ADHD are very in tune with their own ‘self’. Many have been searching for years for a reason as to why they feel ‘different’. All without exception want a best friend and someone to share their special interests with. All want to be given the same chances in life as everyone else. All wish to understand themselves and to find strategies to cope with everyday tasks that others find easy. All wish for independence and a happy life. In order for many to feel comfortable in their own skin they need a title or a ‘signal’ to identify their differences.

Whilst someone with autism may require support during their life, many will only require support at certain times in their life. People with autism all share one thing in common ‘Special Interests’ and will become experts in their specialist interest. Many of our most eminent mathematicians, engineers, musicians, entertainers and entrepreneurs are on the autism spectrum. People with autism are generally never ‘jack of all trades’ but are often ‘masters’ of one in particular which they excel at.

Contrary to many professional opinions it is not the desire of the person with autism or/and ADHD to rely on a ‘label’ to mark their difference in order to secure welfare benefits. A diagnosis is a ‘signal’ to tell others that they may need help in certain situations or a bit of support in environments they are not familiar with. The majority of people with autism and ADHD wish to contribute to society the same as everyone else. Independence and self-belief is the ultimate achievement for a person with autism spectrum conditions and ADHD and a goal to which they can aspire with the right help and support..

A diagnosis is a reason to explain difference and also a pointer to  coping strategies that will enhance life in general. Many have described the moment of diagnosis as exhilarating and a turning point in their lives for the better as at last there is a reason and logical explanation for their differences and to find their identity. I know that’s how I felt, its shortlived as you suddenly realise now you know the ‘title’  there is nowhere to go.

Post Diagnostic one stop shops, Autism Advice Bureaus, drop in service user led support. That’s what I am campaigning for so no matter what information a person on the spectrum needs, its there all under one roof available for everyone in a format that is understandable and comfortable. Everyone is different after all. Simples eh? I wish….big sigh.. dreams do come true right?  That’s another blog for another time.

Autism, Sensory and Meltdowns

Many people don’t realise that autism and sensory processing disorder/sensory differences usually go hand in hand. I believe it is essential for everyone who undergoes autism assessment to insist on having a sensory profile done at the same time.

A large variety of sensory differences impact upon our lives 24/7 365. Whilst some are aware of their differences others are less well informed. Meltdowns associated with the sensory world are caused by prolonged and exposure to sensory triggers. All senses are affected, smell, touch, taste, sight and hearing. What may be perfectly acceptable for one is a living hell for another.

Something as simple as an offensive smell or taste can induce a meltdown. A ticking clock in the background that sounds louder by the second can trigger someone into a meltdown without them even being aware of what caused it. A scratchy label in a jumper, shirt or top may be enough to send a sensitive sufferer into meltdown. The solution to cut it out so simple! Situations and environments that constantly bombard the senses may and can ultimately end in a meltdown as the body struggles to tolerate the battering on its own senses.

Whilst some overwhelming sensory situations can adversely affect many, there are others for which it appears to works in reverse acting as a calming mechanism. The lights, noise, smells of amusement arcades and fairgrounds are often described by some as calming as they distract the person from their own real life problems and difficulties. The bombardment of some sensory sources can dull others that cause the recipient distress. Some would argue that repeated visits to these attractions may be a ‘stim’ in reaction to extreme stressors within everyday life. It is when these ‘stims’ get dangerous that interventions are needed.

sensory overloadSensory meltdowns are slightly different to cognitive or explosive meltdowns in that they are more specific and can be lessened with a reduction or elimination of the trigger or cause. I see them more as a reaction to an action on the senses.

Finding sensory triggers and identifying them will help in building strategies. Planning trips out with plans to avoid sensory overwhelm will give much reassurance to the sufferer. Observing for stims and a high level of arousal will alert those close to the sufferer that a meltdown may be imminent.

Autism prevalence 1:100 I don’t believe it.

Where do I start? I feel as though there is a little person sitting in my brain shouting “Debi, when you next blog don’t forget sensory, parent abuse, blame, child protection, statistics, neuroscience, coping strategies, law and legislation, education, employment, transition, university, relationships, criminal justice, social services, housing, money management, GP’S, advocacy….takes a breath…gulp…. TRAINING the list goes on and on!

That said this blog I decided prevalence.  I’m focusing on statistics as the ones we have at the moment are in my opinion total rubbish.

Currently we are still working on ridiculously outdated prevalence statistics of 1:100 people in this country as ‘having’ autism (for the record, I am autism, I don’t HAVE it!).

When I read that statistic I can’t identify which emotion I am feeling.  Anger?  Frustration or sadness.  Currently we spend a miserable £4 million pa on autism research, in reality we have NO official idea of how many people we are looking at. Many people get’labelled’ autism traits falling short of a clear diagnosis, others come out with the wrong diagnosis completely whilst others simply hit a brick wall and get shown the exit door when they visit their GP’s who are the gatekeepers to a so far non existent service.

My own personal guesstimate is that figures are huge, if I was really brave I would blog it but I fear many would think me bonkers and read no further. With that said,  1:100 is in my opinion a massive underestimation. Either that or everywhere I go I just seem to bump into someone else quite obviously like me on the spectrum!   Talking of which why can I tell in a heartbeat if someone is on the spectrum but it takes medical professionals hours and hours of endless assessments, scoring and tick boxes, not sure why.  Glaringly obvious to me so surely I am not alone, am I?   Sometimes I don’t even have to talk to someone I just instinctively know….yes you’re like me but different. Perhaps the old saying of “It takes one to know one” applies?  Gut feeling/6th sense is known to be strong for those on the spectrum, I have learned the hard way never to ignore mine no matter how off the wall it may feel at the time.

Currently the figures for autism that are being bandied about within the UK are 800,00 but we all know that this number will and IS rising significantly.  OK so let’s take that figure for arguments sake and accept them grrr. Figures for sufferers of Dementia are the same 800,00 however there is no law or legislation to protect them unlike us who have the Autism Act 2009 and Think Autism. So HOW is it that everyone I speak to has an awareness of dementia but looks totally blank when I mention autism?

I have just returned from my local police station where there is a big notice on the front door saying “Dementia Aware” but nothing to say “Autism Aware”. Why?  Don’t we count? Obviously not. It is good to hear about Dementia Admiral nurses, great to know that with ‘A little help from my friends’ (thanks to Public Health England)  public awareness is growing daily. Dementia at last is accepted, embraced and acknowledged.   Good for the dementia community I say however not at our expense thank you, we want the service that we are legally entitled to?  Equality? What’s that all about? Ooops sorry forgot, autism not important.  Dementia life ending, Autism lifelong.

When I tell people there is no department with a welcome for anyone with autism they look astonished almost as though they don’t believe me, however for most of the country that’s how it is. A tiny percentage of areas do give some degree of support however for most of us its a postcode lottery.  Even when you do find a ‘service’ its often not the sort of service most of us need.  The general rule of thumb seems to be that those with a Learning Disability (LD) will be routed via LD departments and those without LD via Mental Health even if we aren’t exhibiting any mental health concerns.  Where else do you send someone with autism who may be in permanent meltdown because they can’t fill in forms? Mental Health Department of course 😦

So if we don’t know how many people in the UK are ‘actually’ on the autism spectrum that means we don’t know how many of us languishing needlessly within mental health departments either? Nor does it tell us how many are currently in our criminal justice system.  So actually we know nothing! That’s the reality. We are working in the dark with no sight of any light at the end of any tunnels anytime soon.

As for the so called ‘experts’ in autism. Who are they? Where are they? University?  They aren’t in the community where anyone on the spectrum can easily access them that’s for sure.  Even if you do meet an ‘autism’ expert do you know how they have become an expert? What training they have had, 1 hr E Learning tutorial perhaps? Who knows? Its anyone’s guess.

What I can tell you is that unless WE speak up and shout out, we will still be living in the land of gas lamps and horse drawn carts. But ending on a positive note thanks to the very essence of Autism itself, there are many people like myself ‘experts by experience’  whose special interest is autism who are now empowering themselves with information, research and facts, doing their homework like no one else can.  Professionals should be worried, for it is us that are the experts, not them.

The future? Its bright, really bright providing WE take charge and speak out. There are plenty of us, together collaboratively we CAN and will make a difference, we HAVE to. We cannot and must not rely on guess work anymore.

 

 

 

 

Autism Advice for General Practitioners GP’s

Many people on the autism spectrum find a trip to the GP’s extremely traumatic. There could be many hurdles for that person to negotiate before they even arrive in your surgery.

Meltdown’s and shutdowns are to many triggered by fear and sensory difference. Many people on the autism spectrum are fearful of professionals and those in authority. Some find that any communication skills they do have simply fly out of the window. Just the thought of making an appointment is enough to induce a meltdown so please consider the effort and energy that will be required to eventually sit in front of you.

So what do you do if your patient has a meltdown in your surgery? Do you understand meltdowns? Do you know how to respond and how to keep your patient safe? Some doctors perceive meltdowns as ‘psychotic episodes’ and take totally disproportionate action as a result. Some people on the autism spectrum have literally been transferred from the GP surgery straight into a mental health institution under a Mental Health Section. Sometimes even the police have had to be called. In England 2008/2009 there was one physical assault for every 61 primary care staff making a total of 3,472. How many of those were as a result of a misinterpreted meltdown and could have been avoided?

By understanding how to make your surgery ‘autism friendly’ you will reduce anxiety and fear in patients who may have an invisible neurodevelopmental condition. Who do you have in your practice that champions autism?  Let’s look at the first steps to seeing a GP in England 2014 and the impact and consequences this has on someone on the autism spectrum. Meltdown’s and shutdowns can often be induced at the very first stages of making contact making the rest of the process extremely challenging.

Making Contact

Most appointments are still made on the telephone. Many people on the autism spectrum don’t choose to communicate on the telephone for many reasons. Misunderstandings are common and understanding ‘meaning’ over a phone for some is difficult. Do you offer text appointments or email bookings? Do you offer any of your patients a choice in how they make appointments?

All anyone on the autism spectrum wishes to do when booking an appointment is to ensure they see the correct person at the correct time with as little hassle as possible. A seemingly innocent comment from a ‘Jobs worth’ receptionist which means nothing to them can be taken to heart by someone on the spectrum making the task almost impossible. Inquisitions and obstruction will simply lead to meltdowns and a feeling of injustice.

Whether it is a parent trying to book an appointment for a child or themselves, there is an awful lot for us to think about when making the appointment. In fact the arranging and getting there can be more traumatic than the actual appointment.

Some surgeries have 0844 telephone numbers which alone can send someone into a meltdown as they rush in order to minimise the cost.

GP receptionist – Many GP receptionists and office staff are not autism ‘friendly’ and can pose a huge problem for many on the spectrum when trying to access a convenient appointment. For some just trying to negotiate a phone with an abrupt receptionist can make the difference between staying at home and asking for help. An appointment with a requested doctor that a patient has to wait for 3weeks for is unacceptable. Many receptionists are seen to ‘protect’ the GP and making the patient feel like an unwanted guest at a wedding. Some receptionists appear to turn into a guard dog once they find themselves behind that powerful sliding window that separates patient from professional.

GP availability – Most surgeries have multiple GP’s with many locums. Some GP’s operate multiple practice and aren’t always available. For many on the spectrum the thought of seeing an unfamiliar face or perhaps a doctor they have seen before and not got on with is a huge issue and will result in non-attendance or refusal. Refusal to allow someone on the spectrum to see a doctor of their choice can lead to traumatic meltdowns that are both unnecessary and a matter of huge injustice for the person on the spectrum.

Journey to surgery

People on the autism spectrum are naturally anxious and live their lives on a high state of alert. Routine and ritualistic ways are second nature for people on the spectrum. Public transport is difficult for many due to the constant overwhelming sensory issues that may impact on that person making them feel unsafe and even more nervous. For those that drive, concern with regards to ensuring they use a route that is familiar and safe to them at a time they can cope with. Many may bring someone with them just to reassure them and keep them safe. Is there parking near your surgery? Are you on a bus route?

Punctuality

No one person on the autism spectrum is the same. Some will arrive half an hour early for their appointment as they cannot cope with being late whilst others will arrive regularly late for appointments and get very upset when they are told it is too late and the doctor is too busy to see them. For some time keeping is extremely difficult and discretion is welcomed. For some their reply is that they are kept waiting for so long every time they visit the doctor they have learned to be late so it minimises waiting/meltdown time for them.

Booking in

By now, just walking through the surgery door may be enough to trigger a meltdown or cause a panic attack. People on the autism spectrum can be affected by tiny changes to their environment. Many describe themselves as fine delicate and extremely sensitive barometers to life in general. How does your surgery smell? How bright are the lights in the waiting room? How are the seats set out? Is there a receptionist on duty who doesn’t have the nickname of ‘Jaws’ for nothing? Has the faithful disc system of booking in been changed (people with autism don’t cope with change well)?  Is the doctor on time? Do we know who to expect to see or is it the nameless ‘clinician on duty’? How long will we have to wait? All these are questions that will undoubtedly run through the mind of someone on the autism spectrum. What can your surgery do to help people on the spectrum?

Waiting room

Waiting rooms can be very intimidating, sensory overwhelming places for many on the spectrum. All eyes are on the person that walks in to the room and for some reason many waiting rooms are like mini libraries with a shhh hushed voice policy and magazines that are 3yrs out of date. Chairs are often uncomfortable and being in an environment with many other people will send many into an even more anxious state. Some people on the spectrum may request a ‘quiet’ room away from the hustle and bustle of the main waiting area. Others may choose to wear out your floorboards or carpet by continually feeling the need to pace. Some may become so absorbed within their headphones full of music to keep them calm, they may miss the doctor calling their name!

Parents with children who are diagnosed or suspected of being on the autism spectrum may exhaust themselves as they constantly have to try and keep their child occupied, appropriate, calm and safe whilst waiting for a seemingly very long time. The odd box of broken toys and ripped cardboard books will not satisfy even the youngest child for long. Some youngsters may even find Mrs Jones in the corner who is clicking her false teeth a fascination and comment loudly on them embarrassing both Mrs Jones and their red faced parents.

Some GP’s surgeries use a ‘tannoy’ system to announce their readiness for the next patient. This sudden announcement of our name can feel quite embarrassing for many who simply wish a hole would materialise to swallow us up.

The walk to consulting room

By now anxiety levels may have reached such a pitch that any consultation with any doctor may prove difficult. People on the autism spectrum do not have the sharpest of short term memories so issues they desperately wish to discuss all of a sudden get forgotten and information is becoming muddled.

The Consultation

How is your consulting room furnished? Do you sit behind a big wooden desk looking very important and intimidating? Or is your chair at the side of your desk, making it more informal and relaxed? Is there a big clock making loud ticking noises that sound to a person with autism like a swarm of bees in their head? Is there an open window looking straight out onto a busy road which could easily distract a person with autism? Is it comfortable, quiet and calming? Are you calm? People on the autism spectrum quickly and accurately pick up on other people’s body language and tone of voice. If you are not relaxed please don’t expect your patients to be.

Are your autistic patients pacing the room unable to sit still? Perhaps they are jiggling their knee, playing with their keys or twiddling their hair? These are all signs of anxiety, watch your patient, and respect their differences. Please remember that patients in a high state of anxiety may forget to tell you what they came for.

Many on the spectrum fear the doctor for a number of reasons. If a person is diagnosed on the autism spectrum, it will have undoubtedly have been a long arduous diagnostic pathway that they will have had to endure. Many have been passed from one professional to another often visiting as many as 20 professionals to obtain their ‘identity’ and diagnosis. It is not a service user friendly pathway and many drop by the wayside exhausted unable to find anyone to help. Many are dismissed into mental health departments as there is no other place to go. For others it is simply ‘once bitten twice shy’ and a matter of trust.

For some simply being not listened to, not believed and even ‘laughed out of the surgery’ is not a great experience so rightly many feel anxious and as though they are a ‘problem’ patient. Many indeed even feel guilty at taking up the doctor’s time and deliberately try to rush their appointment. Others want to pour out their life histories and diversify at every given opportunity.

For those that are coming to your surgery seeking assessment for Autism Spectrum Condition it is their legal right to do so. The Autism Strategy clearly supports this and local authorities should now have their own autism strategy in place.

Please be assured that the pathway for diagnostic assessment for ASC is not something that is taken lightly by anyone. For someone to enter your surgery and ask for this has taken much though. If that person feels that they may be on the autism spectrum why is that so important? Please read down for the reasons.

Who in your area is the local clinical expert for ASC? Who will you signpost to? What is the procedure once the patient leaves your surgery? How long will this take? What happens next? Please find out as all these are questions that you may be asked. People on the autism spectrum are naturally inquisitive and need to prepare for the next stage. What happens to that patient if and when they are diagnosed? What then?

An already identified and diagnosed patient may come to you for help with any other medical issue of course. Will you need to refer them to another expert? Where and with whom? Does that expert understand the patient is autistic? Will it involve a hospital attendance? Will it involve an admission or investigation? Who can explain the procedure to your patient? Who will be at the hospital that understands autism? Who can go with that patient to keep them calm and safe?

Literal thinkers – many on the spectrum are literal thinkers. Simple throwaway comments such as ‘it will only take a minute’ are taken very seriously so. 10mins later you wonder why someone is having a meltdown!  .

Leaving the surgery

How was your patient as they left the surgery? Did they hear everything you had to say? Did they remember to tell you everything? Perhaps when they intended to tell you about the pain in their hip that keeps them awake all night, they were smiling so didn’t communicate their true feelings or emotions? Perhaps they wanted to ask you for something to help them sleep but forgot. Perhaps they have left the surgery with many more worries than they came with and forgotten all they have been told ? Maybe they feel they didn’t use their time wisely and could kick themselves as they didn’t achieve what they wanted to.

Many on the spectrum find giving information, receiving information and remembering it very difficult. Most cannot take notes and listen at the same time which is why there are so many misunderstandings and lack of clarity. Do you ensure that your patient has understood what you have said and taken the right meaning?

Perhaps the wait to see you was so long that they have missed their lift? Maybe now its rush hour and nervous drivers will be dreading the journey home. How far is the chemist if they need a prescription filling out? How long will it take? What effects will the medication have? How will it be re ordered? Is there anyone approachable within the surgery to ask?

Advocacy and respect for choice

Families know their loved ones best, no one would argue with that.  So why when someone on the autism spectrum is accompanied by a person they trust and feel safe with is that person ignored? So many times young people have arrived for an appointment with their parent. Yes so what that they are 19yrs old? Many youngsters and teenagers feel vulnerable in attending appointments on their own. Most prefer to have someone with them that can help them out when difficult questions are asked or meaning needs to be interpreted for them.

Whilst the law may state that someone over 18 is an adult and therefore deemed capable of independence, this is not always true for someone on the autism spectrum. Many young people who have relied on their parents to help them deal with professional appointments as a child feel no different when they pass the magic age of consent.

What can be seen by a doctor or professional as a dominating, controlling parent/carer who appears at constant loggerheads with professionals can also be seen by a person with autism as their safety net that will keep them safe and protect them when they feel out of their depth.

PARENTS AND FAMILY

Whilst some parents and families may be seen as passionately protecting their youngsters and seeking out the best for them, others may be seen as controlling and dominating parents who think they know best.

Often families of youngsters on the autism spectrum will know far more than experts or professionals. Many will research what makes their family different and others will take it one step further and seek academic training in the subject. For many it is a road of discovery as they realise that their youngsters are not the only ones in the family that are on the autism spectrum.

Some families will require the support of others such as social workers, youth workers and carers. Parents need praise and reassurance that they are not being targeted as a reason for their child’s challenging behaviour. Some families have learned to their detriment that involvement from Social Services has sadly meant also unwanted and often unnecessary intervention from Child Protection. Ignorance of ASC is still sadly prevalent within the professional circle.

Parents should always be listened to and respected. Many feel permanently ‘fobbed off’ by outdated un empathetic doctors who think ‘naughty children’ are a direct result of bad parenting. These views are both callous and heinous.

HOME VISITS 

There are occasions whereby someone on the autism spectrum will not be able to make it to the surgery. Home visits can be intimidating and confusing for some people on the spectrum as they may perceive your visit as a ‘social event’ especially if you are their trusty GP of many years (would you like a cup of tea Doctor?). For others it can be hugely invasive as they struggle to answer even something as simple as a doorbell. If you are not known to your patients please always introduce yourself and explain all that you are doing. Emergencies can send someone on the autism spectrum into instant meltdown and panic.

When it all goes wrong

For some people with autism, the doctor’s surgery becomes a minefield and nothing ever seems to go right. For some the stress of the occasion can render them speechless or inappropriate, for others it can exhibit as over the top, loud and perhaps ‘challenging behaviour’. A meltdown is an often public display of distressing and volatile behaviour mainly caused by severe overwhelm in circumstances, environment or situation. For some the consequences can be dire and they can end up being removed from the surgery forever whilst for others it can be the most embarrassing event ever and they never get over it and return.

To a doctor a meltdown may be perceived as a ‘psychotic episode’ whilst to a police sergeant it may be seen as ‘arrest able threatening behaviour’, to a teacher it is seen as a ‘temper tantrum’ or ‘naughty child’. A meltdown is a very painful event both for those witnessing it and those experiencing it. Meltdowns can be spotted and avoided and all measures should be taken to ensure that meltdowns are not ignited within the practice when they could have been avoided.

A meltdown will rarely last for too long given the right handling. A meltdown is an extreme reaction to various varying stressors. Provoking a meltdown in a patient is a failure on the part of the surgery to cater for that person’s differences empathetically.

Enquire with local VO’s and hospital car drivers if there is a pickup service to help people with autism access the surgery.

Make an effort to learn about autism and the legal rights of people with autism.

Remember that it is not you who are the experts in autism, it is the families who live with it 24/7.

Advertise the fact that you wish for your practice to become an autism friendly practice that respects diversity and difference.

 

 

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