Hiya, I've been agoraphobic for over 20 years and now have cancer again (just needs to be cut out with no further treatment). I read another article about being turned down for hospital transport despite describing in detail the symptons making me incapacitated (I am virtually housebound again). I've left messages for PALS without a return call. The Macmillan nurses are great for info. I've made a complaint to the nhs and am waiting for the reply. No taxi driver will want me in his cab when I am wetting myself and drenched in sweat with fear. I cannot risk being put out of the cab if I throw up everywhere. My sister will accompany me but I am still terrified. I cannot understand why the cancer team or surgeon are not able to override the decision of the transport dept to not give me transport. Symptoms qualify for NEPTS and the nurses told me about the Equality Act 2010 and the rule of 'reasonable adjustment' to accommodate all with disability, otherwise it is discrimination. I am running out of time now for my surgery date. I feel trapped by my situation but must persevere in getting transport of some kind as an extension of the hospital so that the driver has some understanding of my situation. I feel so relieved finding you to share my experience. The hospital (UCLH) is now trying to send me back to my local hospital who have already told me they do not deal with this. I would have to be operated on by a surgeon who does not even deal with cancer. I was told my lump was a cyst over a year ago and got 'lost in the system', not given a biopsy to rule out cancer and discharged back to GP because they didn't answer the telephone number I rang for two weeks. I am beyond appalled at how I am being treated after the surgeon told me I didn't have to worry about anything. It has taken about two weeks for the GP to sort out my sedation for the journey. Whether I am able to get there remains to be seen. If I can't I am left with cancer in my mouth. I am by nature a fighter but there's only so much I can take before I fall apart and want to join my deceased parents. Hope I get some feedback, especially practical advice on getting what I need. And I will share whatever advice I can to help others in my situation. Agoraphobia continues to be an invisible and deeply misunderstood condition. I'm a problem because I don't fit into standard boxes.
