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.

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.

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