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Let Down Again By Medical Professionals

Let Down Again

alsAs many of you will know and have followed our story, my Daughter became ill over 4 years ago with ME.  She is now diagnosed as Severe ME, Fibromyalgia plus other conditions. I am feeling Let Down Again, by medical professionals.

This morning when sorting out her morning medication, it suddenly hit me that we have been let down again.  This should not be a surprise really. Also for you as I have written about this many times before.

Medical Professionals

When C first became ill we had a lovely (at first) Consultant who seemed to generally care about C.  In the end he had no idea of how to treat ME. He kept telling C when he next sees her she will be running around and back to normal.  On our last visit he had her in tears and she refused to see him again.

Our next Consultant was great and we only stopped seeing him as he retired. Unfortunately that hospital did not see children with ME.

We were put back under GP care, unfortunately our GP does not understand ME. The arguments that I have had with them are amazing.  We took C for a regular opticians eye test last August. This resulted in us having to urgently take her to eye casualty.  She had a mri the same day and turns out she had excess fluid around her brain and pressing on her optic nerve.  This resulted in her having 2 lumbar punctures and finding a lovely Consultant who was shocked at the treatment we had received and that we were under no Consultant.  She promised everything and would look at all services she could to get C the best treatment possible.

We felt finally someone was listening to us. We had an outpatients appointment to see her in November which was then cancelled and promised to be rebooked.

Medical Help in 2019

C was crying in pain with her head, I rang our Consultant but spoke to her secretary who passed the message on.  My Consultant rang and told us to bring her into be checked for her fluid level around her brain.  To go to A&E and they would send her straight to the ward.

We rushed her there checked in at A&E and had to sit in children’s A&E waiting to be seen, I told them we had to go straight to the ward but no we had to wait.  This is with a child who due to her headaches has noise and light sensitivity.  Finally after 2 hours we were seen and they phoned the ward and was told our Consultant was not there and we had to wait in A&E. Another 3 hours waiting and someone came to see her and agreed they could see pressure.  Another person came and said it was fine and after 7 and a half hours we were sent home.

This has happened twice now, and we have still not seen our Consultant even though I have tried many times to see her. So fed up of being let down all the time.

We had enough

Finally, I contacted our MP, who we met and he was disgusted with the treatment we had received.  He is aware of ME as he goes to the debates in parliament when he can.  He contacted the CEO of our hospital while we were there and forwarded the reply for our response.

The hospital came back with a load of made up stories to which we responded with proof.

About two weeks later our Consultant phoned me and admitted she does not know about ME and what can be done to help C.  She agreed to put the referral through for physio and after me stating it was just for muscle strengthening and not GET, she agreed to put this in the referral.  We have her first appointment next week.

UCLH is our nearest hospital that deals with ME. Unfortunately they are not taking on any more referrals, other options are miles away with inpatient.  This would mean us having to take time off work and find somewhere to stay while she was in hospital.

We are also under a Neurologist who is great, and has helped with new medication, we last saw him in April and I am trying to find out when our follow up appointment is.

What happens in the future

C is going to be 16 in November which means she will be under adult Consultants, I am hoping that this will mean she gets better support and treatment to the lack of what she has been receiving up until now.

Having a child with a chronic illness is hard and unless you are going through this as well, no one understands just how hard it is living everyday like this.  But the medical professionals should be somewhere we can rely on to get the medical support needed.

C had her eyes checked a couple of weeks ago, and is really suffering again. I do not know what to do or where to go, as from where we are at the moment. No one cares or understands, or will give her the medical support needed.  I am just praying it is not fluid build up and just a headache.

Sadly this is a common story and is nationwide not just my area.  Surely this is something that has to stop and be addressed.  Our children are missing out on so much they have lost their friends, schooling has gone because they are too ill, no social life.  Come on medical professionals please help us.

Let Down Again

 

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Comments (20)

  • Kim Carberry 3 weeks ago Reply

    Oh no! Poor C. The poor love.
    I really hope that when she does turn 16 she gets better treatment. It’s disgusting how she has been let down so much. Sending love and hugs x

    admin 3 weeks ago Reply

    Thank you, she is complaining of her head again now as it used to be and not sure what to do or where to go with it at the moment

  • Razena 3 weeks ago Reply

    Your daughter and your family have been through so much and I can’t even begin to imagine how difficult it has been for her and you. I pray that someone in authority will make an actual effort to ensure that she has the treatment she so obviously needs so that you can have some peace of mind.

    admin 3 weeks ago Reply

    Thank you our MP wrote to the CEO of the hospital and that hasn’t helped so not sure where to go next

  • TeamRyCe Road3ps 3 weeks ago Reply

    OMG, seeing a kid struggling from pain is really heartbreaking. Praying for your daughter and your family as well.

    admin 3 weeks ago Reply

    Thank you, it is hard and frustrating I really am at a loss of what to do at the moment

  • Marjie Mare 3 weeks ago Reply

    Sorry to hear about the struggles that your family and C are going through. Because of her condition, she might be eligible for case management where a health coach could help you locate available resources and also navigate the healthcare system. Best of luck!

    admin 3 weeks ago Reply

    Thank you, I hav enot thought about looking at that approach, I will definitely look into this x

  • Kristine Nicole Alessandra 3 weeks ago Reply

    I can relate to your story, although in our case, it is my husband who is ill. It is so difficult to get the treatment needed and it seems these medical professionals just make you keep coming back for appointments but not actually providing relief from symptoms.

    admin 2 weeks ago Reply

    I am so sorry you are exerpiencing the same, it is hard watching someone you love and care for go through this. I hope things improve for you both x

    Khushboo 2 weeks ago

    Sorry to hear about it. I pray everything will be fine soon. Stay strong

    admin 2 weeks ago

    Thank you x

  • Karla 3 weeks ago Reply

    I’m so sorry to hear about how you were treated. I don’t know if this helps but I prayed for you and your family. I hope she gets well soon.

    admin 2 weeks ago Reply

    Thank you that is so kind of you x

  • Melanie williams 2 weeks ago Reply

    it is disgusting that you have had such a had time. You should not have had to write to your MP but good on you for doing so xx

    admin 2 weeks ago Reply

    It was the only option we had in the end, sorted a few things out but still have things that need sorting x

  • Dalene Ekirapa 2 weeks ago Reply

    So sorry to learn about how you’ve been let down and have not been receiving the right treatment. But I’m glad that you realized this and stood out for your cases. You will get through this just continue being strong and positive. I also hope that your daughter gets adult consultants who’ll treat her better like the angel she is!
    Hugs!

    admin 2 weeks ago Reply

    Thank you, I am hoping things will change and start to improve when she is 16

  • Elizabeth O 2 weeks ago Reply

    No patient should be treated that way. They should have the compassion and patience. Hope all is well for your daughter and to you.

    admin 2 weeks ago Reply

    Thank you, sadly it is becomming more and more common x

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