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How to get the best out of medical appointments…

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I am participating in this month’s Patients for a Moment blog carnival!  This month’s carnival is being hosted by Abigail at Hidden Courage.

The Patients for a Moment blog carnival is held every month and solicits submissions from bloggers regarding a topic related to illness, whether it be from the perspective of a patient, carer or a professional – the carnival is open to everyone.

This month’s theme is: getting the attention you need.  Specifically, getting the attention you need as patients within the healthcare system.   I am sure every patient, has been casually dismissed by a busy, overworked doctor, with a glance at their watch, counting down the time when we should be out, and time to see the next patient.

It seems as if doctors are constantly watching the time
It seems as if doctors are constantly watching the time

However, what is it like to be a patient with a long-term chronic illness, where it seems that we are constantly being dismissed by the healthcare system.  And what can we do to get the attention that those with chronic illnesses need and deserve despite often having difficult and challenging conditions which are not always easy to diagnose nonetheless treat.

As a patient with a long-term chronic illness; an illness which went undiagnosed for years, and one which was misdiagnosed as an anxiety disorder, I have at times felt ignored or dismissed by the healthcare system on countless occasions.  When I tried to challenge the doctors that the dizziness started before the anxiety, however, I was dismissed yet again, probably deemed to be a hypochondriac  and again sent on my way.

Being ignored and dismissed by doctors, and being constantly told that the symptoms you are experiencing are just ‘all in your head’ can be demoralising; especially when the symptoms that are supposedly in your head are for you, very very real.  A problem that I often experience is the lack of consistently in my care from the medical profession.  The surgery that I am registered with has several different doctors, and you are never guaranteed to an appointment with the same doctor.  This is a real disadvantage for patients with an unusual chronic illnesses as it means that you have to reiterate your medical history, diagnosis and so on at every appointment.   Also different doctors have different methods of working and ideas, therefore patients with chronic illness often prefer to see the same doctor for consistency in their care and to see a doctor that know their full medical history and familiar with their diagnoses.

So, whenever I make an appointment with my local GP Surgery, I makes sure that I ask to see my regular doctor – doing this also saves me and the doctor time as I don’t have to waste several minutes of the appointment explaining my medical history.

In the end I had to fight very hard to even get a referral to see a neurologist.  I was lucky that I had a strong support system in the form of my parents, and found it incredibly useful to have an advocate present during the appointment to stand up for me when I didn’t have the confidence to stand up for myself.

Another barrier that I have found is the routine questions that doctors often ask, such as asking to describe what the dizziness is like; however how am I expected to describe an experience that is so difficult to explain in words – especially when put on the spot.  Often I have found that there are so many ways to describe certain symptoms, and I cannot always find the right word to describe the experience of the dizziness, or trembling in my legs.  If patients are inconsistent in their account, doctors are then more likely to dismiss them and not take them seriously.

In order to avoid this barrier, and to ensure that I adequately describe the symptoms accurately and consistently I write my experiences with my illness (both physical and psychological symptoms), in a journal and then take it with me to appointments.  A second notebook is also very handy to take along to appointments in order to write down notes regarding the information and advice that the doctor passes along to you, especially helpful if you are likely to forget after the appointment has ended.  Not only is it helpful to make notes it also shows the doctor that you are a patient whom is pro-active in their approach to their own health, and also are a cooperative one.

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Keep track of your illness by journaling! And takes notes during appointments to get the most out of it…

So to reiterate; in order to be taken seriously by the medical community and not to be dismissed by doctors here are my tips on how to get the best out of appointments:

  • Do not be afraid to advocate for yourself to get what you need in terms of referral, treatment and so on.  If you are unable to do so for whatever reason then perhaps take someone along to appointments so they can advocate on your behalf
  • Try and get appointments with the same doctor to get consistency of care and prevents you from having to divulge your entire medical history at every appointment
  • If you can, try keeping a journal or even a small notebook where you can keep account of your medical condition, such as symptoms – the frequency, severity and whether certain treatment or approaches seem to have any impact on them
  • To show that you are a cooperative and pro-active patient, take notes and ask open-ended questions at appointments which will less likely result in you being dismissed by doctors and other medical professionals
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HAWMC 2013 Day 12: “When I was diagnosed I wish I knew….”

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?

Getting a diagnosis for me, was bittersweet, on the one hand, I felt relieved – relieved that all the tests and hospital appointments; relief that in fact all the problems were not just “all in my head” as I was told so many times before by a number of doctors. It felt as if a huge weight had suddenly been lifted from my shoulders; all the symptoms that I had been experiencing had finally been validated by the medical community – finally I had proof. Many people hate labels, however labels can be useful – labels can bring people together and give a sense of belonging as well as the knowledge that there is a label and name for what you are experiencing.

On the other hand, however, here I was being told the diagnosis – a long-standing brain stem lesion. A condition, which as the name suggests is life-long; not curable and furthermore was told that there was nothing that could be done in terms of treatment. This, as you can imagine, is disheartening and frightening. The first thought that goes through your head is “Well, that’s my life over!” At that time, the symptoms were bad that they were leaving me unable to work, and if the condition was one in which was life-long then does that mean I’ll never be able to work? The situation I was finding myself in felt hopeless; as if I no longer had anything to look forward to.

So, if I was able to go back in time and talk to myself on the day of diagnosis, I would tell myself as bleak as things look at that moment – it does get better. I will tell myself all the wonderful achievements that I manage to achieve – completing course, starting a blog, asking to write articles for various websites, and even going to help set a group for those with illness and disabilities and becoming secretary of that group.

As I remember, at the time of the diagnosis, because of the severity of the symptoms I was unable to go out. Even now, I am unable to go out unless I was accompanied by another person, however back then the amount I spent outside of the house was very minimal as my parents worked and there was no one around to take me out. Therefore, after being diagnosed I was afraid that my life would involve staring at the same four walls everyday, stuck inside with just the dog for company. If I was able to return to the day of my diagnosis, I would be able to tell that girl sitting there that her life didn’t have to be that way – she could get help from Social Services and with the help of direct payments be able to employ a personal assistant to help her get out into the wider community and be able to do all the things that she wanted to do – be able to choose her own beauty products, shop for herself instead of relying on her parents or internet shopping, as well as going to the cinema or swimming. All of the above which I am now doing and enjoying every minute! Now I feel I do have a purpose and with a little planning am able to do all those things that I had wanted to do but felt was unable.

At the time of the diagnosis I also felt lonely – as if I was the only person going through all of what it was I was experiencing. If I could go back and speak to myself on the day of diagnosis I would surely tell myself that I will eventually find friends; friends both online and offline who although do not have the same diagnosis but nevertheless understands what it is like to live a life with illness. Would also tell my younger self that those feelings of isolation and loneliness would not last forever.

I would tell the sad, lonely girl to stay strong and positive and ensure her that positive things will eventually come into her life.

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HAWMC 2013 Day 9: Carers, How to Treat Those You Care For

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Patients, what advice or tips do you have caregivers out there – professional or otherwise!

To be a patient can be exceptionally difficult – it can be lonely, isolating and as a result we often rely a lot on our caregivers, specifically close family members.  We rely on them for emotional support, often financial support, and also caregivers also asked to carry out all those tasks when we are incapacitated and unable to do so.  It is very hard to give tips for caregivers, as the needs of individuals with chronic illnesses varies greatly depending on their condition and the severity that the symptoms affect them.  However these are a few tips that I could give:

  1. Try to understand the patient and their situation, whatever that may be.  It is true that it is very difficult to understand the predicament someone is going through, unless you have been through that situation yourself, and this especially applies to the experience of chronic illness.  However, if you are caring for someone with a chronic illness, and particularly those like mine which can cause unusual symptoms, listen to what it is like for them and try to understand how frightening it must be for them to go through.  Learn about any possible triggers that can cause symptoms. 
  2. Of course, caregivers are not only family members and close friends, but many are employed to care for those who are chronically ill.  For example, I have a Personal Assistant (P.A.) .  In this case it may be particularly useful for you to ask the person you are caring fir, questions about their condition and educate yourself as much as possible about all aspects of that particular condition as it will make it much easier for you to care for them as well as knowing how best to help them overcome some of the difficulties experienced as a result of the illness.  Find out the needs – for example, I often when using my crutch like to hold onto the arm of the person with me, to help keep my balance and to prevent falls.  It is imperative for caregivers to find out the needs of the patient before all else, to let the patient have semblance of control over their lives.
  3. Be understanding and patient.   it can be very difficult to plan ahead of time; to plan days out and other activities as the patient will not know how they will feel as that particular moment of time.  Trips might have to be postponed or cancelled at short notice.  This can be very frustrating for not only the patient but also the caregiver.  In these instances it can also be important for carers’ to be PRACTICAL and INVENTIVE, perhaps thinking of other activities that the patient can take part inside the house – this could be time spent playing board games, or a cinema afternoon playing favourite movies with popcorn and wrapping up with a quilt or blanket.  Or perhaps one of my favourite hobbies – making cards!
  4. Be NON-JUDGEMENTAL as many conditions produce symptoms that can be embarrassing or hard to understand, so it is very important for carers to not judge the person because of them and instead be supportive and kind.
  5. To LISTEN, be SUPPORTIVE and SYMPATHETIC.  This is incredibly important after the initial diagnosis; the patient will be scared and incredibly anxious about what the future will hold – not knowing if the condition will become worse and so on.  In this case show that you still love the person despite everything.  Also, never assume you know what the person is feeling or experiencing on a daily basis.  If  they say they are feeling very dizzy, and finding it incredibly difficult and so cannot go out – then BELIEVE them!  Give the person a cuddle – or go out and buy them a treat to put a smile on their face.  They’ll be very appreciative of it – I know I did when a very dear friend gave me a beautiful bunch of flowers; or when another friend sent me a beautiful butterfly brooch as she knew how much I loved them and wanted to do something nice for me when I was going through a difficult time.
  6. To HELP out with certain tasks that may be difficult for the person you are caring about and to not make a big deal about doing so, as this can be detrimental to the self-esteem of the patient.
  7.  To keep a list of contacts somewhere accessible in case of emergencies – including doctors telephone number, emergency contacts and other information that will be useful.  This is useful when dealing with conditions like mine, where falls and accidents can very easily occur.  I have certain telephone numbers that I can ring if I hurt myself or an emergency crops up when I am on my own.  If the patient has deteriorated and mobility has become severely affected; falls and accidents are becoming more prone than I would definitely advise getting a social services assessment done as they can provide excellent resources and can offer assessments for adaptations for the home if needed, as well as offering services such as ‘LifeLine’ where emergency contacts can be alerted in the event of a fall or some other accident.  They can provide peace of mind for carers when they need to go out but are worried for the patient’s well-being.
  8. And lastly, it;s important for carers’ not to burn out themselves so I would advise for them to take time out for themselves – perhaps, join a support group for other caregivers’ or take up a new hobby or past-time.  Generally keep fit and healthy so that you are able to provide the care that the patient needs.

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But perhaps most of all, it would be useful to give tips to doctors advice on how to care for those with chronic illness.  So, many times I have read stories on blogs or forums regarding the poor treatment of them, lack of sympathy and understanding.  It’s ridiculous, as to my knowledge medicine is supposed to be a ‘caring profession’.  So, perhaps it is time that the chronically ill rise and tell doctors how we would like to be treated.  If I could advise doctors on how to treat us, these would be my top few:

  1. Take an active interest in patients – learn their names, find more about our lives, likes and dislikes and more importantly everything there is to know about our health, and I mean everything, especially if the person is yet to be undiagnosed as you never know which information may be important to find that all important diagnosis.  Be warm and friendly, and treat the patient as a person rather than a set of symptoms, this is important to build rapport with the doctor, as if no rapport is established; then it makes it so much more difficult to be able to open up to the doctor and tell everything that is going on with our health
  2. To LISTEN and more importantly BELIEVE your patients.  I am sure we have all encountered doctors who didn’t listen to anything that we have told them during consultations and instead, the doctor merely made assumptions regarding the health of their patient.  So, doctors please listen to your patients and believe in them – fight for them; fight to get answers for them and don’t give up on them!
  3. Be upfront and tell the patient all of the information regarding tests results and so on – This is for me is one of the most important tips that I could offer a new doctor or nurse.  There really is no point, in my opinion, to sugarcoat information – the patient has to know everything there is to know so that they can make an informed decision.  I remember that I only found out about part of my condition, the spastic paraparesis after reading about it on a letter that the consultant had sent my G.P.  This consultant had never mentioned about this during the appointment I had with him, and if I had not read the letter, then I would not know anything about it.  And if I hadn’t know about it, and after searching about the condition online then I would have been very worried and distressed when the condition in my legs started to deteriorate as I would not have had a clue what was going on due to the lack of information!!  So please, newly qualified doctors, make sure to tell your patient all there is to know regarding the results of tests run, or even regarding the condition that has been diagnosed so the patient knows exactly what to expect.

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What advice would you give your doctor or caregiver?  Please get in touch – as always would love to hear your thoughts!

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Winter and Ice has arrived!…My Nemesis…

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Ice crystals Hey Everyone I hope that everyone is well and so far is experiencing a great 2013!  For those living in the UK, as I am you may be aware that the country has been affected by snow and icy conditions; schools have closed here in Wales because of widespread icy conditions therefore making driving hazardous. I know for many, snow brings joy and happiness – the picturesque scenes that it creates as well enjoying snowball fights and so on.  However, for many people; those in similar circumstances such as myself, it can create anxiety, even leaving some housebound during these weather conditions.  For example, this morning I had an appointment at the dentist; however, I was unable to attend because where I live was extremely icy because of the ice that developed overnight.  Myself, as well as my parents were concerned due to my impaired mobility and balance problems that I was at a high risk of a fall…I am very fortunate that despite the numerous and often severe falls that I have experienced, I have not broken any bones, so we did not want to risk anything that may potentially break this record!! The Winter can be a difficult time for anyone with a neurological condition like mine; especially as the very cold weather can make the spasticity in my legs worse than usual.  As well, as heightening the nerve pain. So, what are some of the ways in which those like me with neurological conditions can cope with the icy and winter conditions?  Here are some tips that I have found from magazines and the internet:

  • Keep warm!  Extra layers such as thermal underwear can keep the heat in, and stop symptoms such as nerve pain from getting worse because of the very cold weather.  And don’t forget to keep hands and feet warm with thick socks and gloves as well as a warm winter coat, hat and a scarf when out and about. 
  • If the nerve pain is confined to a particular region in your body, then make sure that region is well protected from the cold as the cold can heighten the amount of pain experienced
  • Hot water bottles and heat pads can be extremely useful for extra warmth – or perhaps, use an extra thick blanket, or invest in a ‘slanket’ which is a blanket with sleeves and even some has a pocket for your feet!  Great for keeping warm when watching TV on those very cold nights!
  • Keep your home warm – the ideal temperature for your home during the winter month is between 18ºC and 21ºC.  And the bedroom at night should be kept above 18ºC
  • Stay active as it increases the circulation and generate heat
  • If nerve pain is much worse during the winter months than perhaps it would be a good idea to speak to your doctor for extra medication to help during these months
  • If it isn’t necessary than it may be an idea to stay indoors especially if you experience problems with balance in order to prevent falls
  • If you do have to go out for any reason than make sure you wear appropriate footwear; for example flat footwear with rubber soles provides better traction on the snow and ice than leather soled footwear or high-heeled shoes
  • Where possible make sure that you use handrails
  • Take small steps in order to keep your centre of balance and walk slowly
  • Avoid carrying heavy shopping bags, especially on steps

For more information:

How do you cope during the Winter months; and particularly when there is snow and icy conditions?  Are there any other advice you can give to cope during these hazardous weather conditions?

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