Brief history: diagnosed trip neg Essential Thrombocythaemia ('ET') in around 2017, since then had a host of other medical issues diagnosed - fibro, migraines, FND and now ME.
My platelets have dropped from 1.2 mil to 450,000 with no treatment other than a thinner over the last 12 months. In that time ive had upper left quadrant pain behind my ribs, worse after eating, and decreased appetite.
I dont see a haemo, just get a blood test and follow up text every 3 months. This time ive replied with a text back asking for an appointment about what I can only assume is splenic pain and ive been sent my usual blood form in the post and no reply to the text. I tried calling but no-one answers. This isnt the first time ive been ignored.
I’m sorry to read about your issues. Can’t be easy.
Perhaps the @BloodCancerUK_Nurses can offer some suggestions on what to do next. I have tagged them in this response so hopefully whoever is on duty this morning will pick this up.
One thing you might want to consider is calling the PALS Team (Patient Advice and Liaison Service) at your Hospital and calmly explain the challenges you’re having with communication and getting in touch with your team.
I know others on the Forum have had success when going down this route.
You should be able to find their number on Hospital Website. If not go through main switchboard and they will connect you.
Only likely to be able to contact PALS weekdays but I couldn’t be 100% certain about that.
Thank you for taking time to post your query on the forum
I’m so sorry you’re having to deal with all of this, especially when you’re already managing so many health conditions.
It’s really frustrating to feel like you’re not being listened to when you’re raising genuine concerns about changes in your symptoms.
I think you’re absolutely right to keep pushing for a proper review rather than just another blood test and text message.
Given your Essential Thrombocythaemia ('ET'), the drop in platelet count and the ongoing pain and loss of appetite, I wouldn’t want you to be left waiting without someone properly assessing you.
As @DuncanB suggests - it might be a good idea to try contacting PALS at your hospital to explain what’s been happening and how difficult it’s been to get a response from haematology? They may be able to help you get your concerns heard.
Please don’t feel you have to just put up with this, and if the pain is ongoing or worsening, please seek urgent medical advice rather than waiting for haematology to respond.
I really hope you get some answers and the support you deserve soon.
Sorry to hear this @loverlygal, how very frightening and frustrating to feel like you need attention but seem unable to access it. Great suggestions from @DuncanB and @GenesisDevice in addition to PALS, I would ask the GP to write to haematology on your behalf, either that, or refer you again citing platelet drop.
I’m so sorry things have been so difficult. Sometimes, you just need somebody to talk to don’t you.
I would’ve given the same advice regarding PALs. Hopefully they will be able to help. Remember the helpline is there if you want to talk things through before talking to PALS
Thank you for your post. We are so sorry to hear that you’re going through an understandably worrying time and it sounds frustrating that you’ve been trying to get answers and haven’t been able to speak with anyone directly.
Could we ask is it the GP or a haematology team who take your bloods?
Given the pain you’re experiencing and the changes you’ve noticed, we would encourage you to keep trying to make contact with the haematology team and let them know about your symptoms so that they can support you as best they can. If you are not under haematology at present, your GP should refer you back to haematology and can express you are concerned these symptoms may be related to your Essential Thrombocythaemia ('ET') or spleen.
If you have a Clinical Nurse Specialist (CNS), it’s worth contacting them directly. If you don’t have their details or do not have a CNS, you could call the hospital switchboard and ask to be put through to the haematology department or the haematology medical secretary, who may be able to help arrange an appointment or ensure your concerns reach the team.
I can see others have already shared some great suggestions. If you continue to have difficulty getting a response, contacting PALS (Patient Advice and Liaison Service) may also be helpful, as they can support patients who are struggling to access appointments or communication from their hospital team. You can find your local PALS via Find patient advice and liaison services (PALS) - NHS
We do hope you are able to get reviewed soon and get some reassurance about what’s causing the pain and reduced appetite. Please do keep advocating for yourself and seeking support through urgent care such as 111 if your symptoms worsen.