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Being an Advocate for Your Own Health

We often hear about when people are supported and champion the healthcare given, myself included. But what do you do if you feel you aren’t getting anywhere or you aren’t being heard? This is a tricky topic to navigate, and I must start by saying as I have in previous blogs how much I appreciate the care given to myself and my little boy during countless surgeries and hospital stays. Nevertheless, I would be lying if I said we haven’t had difficulties along the way. Communication is often the cause when messages don’t get to the right person or details haven’t been communication correctly to the wrong person, or even not at all.

I was living in chronic pain for 5 years and going to endless appointments when a pain consultant put me on enough pregabalin and tramadol to knock out a field of horses! As we know, when you have no large colon (mine due to Hirschpsrungs disease) you don’t have the best absorption and more importantly there is no way of knowing the rate of absorption either. Trial and error with medication is the only way to overcome chronic pain and that can be a long and difficult road. A colorectal surgeon finally said they couldn’t do anymore for me and that the risks with surgery were too high. I couldn’t accept that as a final answer, even with all the pain medication my quality of life was very poor and I wanted an active future with my family. Following this I made a private appointment with a colorectal surgeon that was highly regarded after doing some of my own research. One appointment in and I was put on their NHS list. Fast forward 2 years and I’m sat here working, training for a half marathon with my stoma. Now I appreciate not everyone has this same outcome, but if I hadn’t have got anywhere privately I would have tried other avenues until I had exhausted them all.

That’s all we can do isn’t it?

With this in mind, I have shared below my top tips for being your own advocate. I hate that I am even having to share this, but it is necessary and I hope it can help at least one of you to keep going to find the answers you need to move forward with your own healthcare.

Do your own research

Healthcare workers can not possibly know everything in their field and have it at the front of their mind ready and waiting with all the different people they see, and illnesses that they could be presented with. Doing your own research takes a fine balance of educating yourself and not scaring yourself as a result. Many conditions present with similar symptoms and in my sons case it was missed that he had Coeliac Disease because his Hirschsprungs Disease was presenting with the same symptoms. It wasn’t until I asked the doctors to test him for it that it came back positive. This was 18 months too late and caused damage which contributed to him needing a feeding tube and TPN (total parental nutrition – intravenous nutrition where broken down macros and micros are administered, to be absorbed in the blood to give the digestive system a chance to heal). Ensure you only use reputable resources for your research and if you do want the opinions of others people that have similar conditions, keep in mind that everyone’s body behaves differently, no two people are the same, and what is happening with them may not be the same with you. Use information gathered as a tool to ask questions and be investigative with the professionals.

Be open and honest

Having a chronic illnesses can be debilitating and exhausting. Many find they simply get used to being in pain most of the time and this can have turn into a downward spiral of depression and anxiety. If you have symptoms that healthcare workers are struggling to help with, don’t give up and talk to your GP if you feel your mental health is being affected. It may mean you could benefit from some psychological support or therapies that can be used as a coping mechanism while you try to find a solution. Share with your loved ones and friends, keep the conversation going, or start your own blog. I started mine on Instagram @gutsy.mum to raise awareness of my sons condition and I made connections with others that proved a secure and safe space to share my experiences at the time. If you don’t feel the need to share, journaling is a good way of getting everything out that’s just for you.

Keep records and letters

I can’t emphasise enough how important it is to keep all correspondence from the health boards. This has been essential in times of applying to DLA (disability living allowance) when I had to give up work to be a carer for my son. If your health care isn’t going to plan and you need to make a claim you will be asked for relevant correspondence which could include any letters or reports. Having it to hand can save a lot of time. If you change GP the transferal of notes can be slow, so if you need an appointment before it has all been sort through, having the hard copies will help here too. I make sure I take a notebook and pen to all appointments. You think you will remember everything said but if you are like me and still have baby brains 6 years on, there may be little details that you forget. I tell the consultants at the start that I will be taking notes to remind myself later and I have never been told I can’t. If you feel it is too distracting to take notes during the appointment, make a point of writing it all out as soon as you can following your appointment while its fresh in your mind.

Communication

If you have several disciplines over seeing your healthcare, communication can go astray when you see them at different appointments. I have spent a lot of hours going over information told by one consultant to another when they could have already known before hand. I always make sure to ask that any letters of summary following an appointment is forwarded to everyone involved in my care. That way time can be saved having to explain things over again. It is also a good idea to take letters with you incase it hasn’t been done so you can show them. I have the emails of all the consultants secretaries and will ask to have results and letters emailed. Secretaries have all the contacts at their disposal and are worth their weight in gold. Don’t be afraid to share concerns or problems you have as they should be able to get you to the right person quicker than leaving a message else where.

Don’t take no for an answer

This is the last but most important one. No one knows your body more than you. You may not have the letters after your name but you live it everyday, know the symptoms and how it makes you feel. Never hold back on sharing this when needed. If you don’t get a good feeling or trust what someone is telling you, ask for a second opinion. Ask to change consultant if needed. If you feel there has been neglect or misunderstanding, keep a record, keep diaries and make the relevant bodies in your health board aware. Every health board will have this information on their website. I hope you never have to do this but should it be needed, fight for yourself. Make yourself heard. You don’t want to have any regrets where your health is concerned.

Take care, Rach x

@gutsy.mum

Meet the blogger: Rachel

Rachel is a part time baker and healthcare blogger who started raising awareness of stoma surgery following the birth of her son Jake. Jake was born with the same condition […]