Here comes a rant!

[jillydabrat]

I was due my 10 week check up yesterday but for the last 3 previous check ups I have arrived expecting to see my consultant only to find she is not there and I was seen by a member of "The team". This wouldn't be too bad except the first 2 times I was seen by a very lovely Italian lady who was polite and cordial but I could not understand one word she was saying. My husband and I would leave the consulting room asking each other "Did you understand anything that was just said?" The last appointment I, again, was expecting to see my consultant but, again, she was not in clinic. I was seen by an Asian doctor who just looked at my blood results, said "They are good" and that was it! I told him that I needed a repeat prescription of my Hydroxycarbomide and, this is no word of a lie, we sat there for 20 minutes while he tried to do an electronic prescription. He never spoke another word! I was told by my GP that I was anaemic and I asked him about this but he just ignored me and kept fiddling on the computer. After this I vowed I would not attend clinic unless I saw my consultant so, yesterday I had an appointment for 3 p.m. I phoned all morning to see if my consultant was attending clinic that day but nobody knew. I tried her secretary but I just kept getting a voice mail recording. At 1 p.m. I phoned the Haematology department and was finally told she was not going to be there. I told them that I wouldn't be attending in that case and asked that they do a prescription for my Hydroxy that I could pick up at the hospital pharmacy. The secretary got snotty and told me that "If" she could see the consultant she would get her to do a prescription and that if I wanted one then I would have to attend clinic that afternoon. I explained that I had called for a prescription before in between appointments and had got one no problem so why the sudden arkwardness.

I want continuity of care, not passed from one person to the next. We figured it out yesterday that I had not seen my consultant this year! I have had a TIA during this time and could not discuss my concerns with her.

Has anybody else experience this and what did you do to sort out the problem? Am I being obstinate in wanting to see my Consultant?

I did receive a call from the Unit Manager a short while later who was concerned that I would have no Hydroxy as, she explained, it is vital I continue taking it. I explained I had enough for half way through next week so she had given me an appointment for Monday with my consultant but, again, she said she could not guarantee my consultant would be there! I feel I am banging my head against a brick wall.

[Aime]

Hi, EVERY sympathy. It’s hard enough having a chronic condition with all these symptoms without yet more barriers being put in your way. You shouldn’t have to waste precious energy by chasing appointments and prescriptions. I know there are so many lovely people working for the nhs but the system itself is adding to our burden when it causes extra anxiety and stress.

I don’t think you are unreasonable asking to see one consultant. I’m the same - I’m fed up with travelling for hours, being out of pocket and then not seeing someone at all or a medic of less expertise.

The fact you’ve had a TIA, should be reason enough for you to see the best. Please continue to insist on an appointment with whoever is best for you to see and don’t be put off by frosty secretaries. Again, some secretaries can be so helpful but the awkward one seems to pop up when your need is greatest! To get to my GP is like an interrogation! Sorry I’ve just had a rant in reply to yours but every sympathy and an appeal to the minority of medical staff who don’t have empathy with their patients .

Kindest regards Aime xx😿😾

[john0084]

I went to pals at my local hospital when I wasn't getting the answers I wanted,it didn't make any difference. I think we're caught between the devil and a rock hard place.I'm looking into a referral which might mean travelling another 30 miles, but for my piece of mind it will be worth it. Regards john

[Swede]

Hi there, yes, I was sent to anyone ...for a while. Then I told them that it was not on and it had to change. Now I always ask, when booking the appointment and just before the appointmentI ring and check...

I cannot be seen by somebody that cannot even speak English, nevermind communicate with a patient.....I don't care where they are from or how they look, as long as they are there for me, not me for them.

So, no, everyone must ask for a different doctor if you don't feel ok with the one you are ment to see.

[mhos61]

Sorry to hear this. It’s quite unsettling to lose that continuity of care. I’m sure this must have an adverse effect on the health of the patient too.

I don’t know what the answer is other than complaining to PALS, or maybe review other hospital haematology departments in your area. I hope you manage to rectify this situation soon.

Keep us updated

Mary x

[Stevesmum42]

Oh Jilly you do not need this stress It's just so concerning when you have a situation like this . We have a complex condition which I feel needs continuity of care. A relationship forged with your doctor is so important. He/she will understand you as a person which helps so much in our care. After you TIA you must have wanted to be reassured and to have talked about it. I am upset for you ..20 mins consultation after 10 weeks does not seem to be an unreasonable ask. Then to sit in front of a medic whom you cannot understand what is being said is just appalling. It's a sad and worrying situation. I believe there is a shortage of heamotologists in Uk.

I do so hope you get to see your regular Doc very soon. If not at least someone who you can communicate with and understand clearly. Most of all we need to know that we are in safe hands .

Sandy.x

[MCW22]

I too had the experience of seeing a foreign team member who was difficult to understand and also made a few mistakes. Now I always ask to see a consultant only when I check in for my appointment. Can you get the hydroxy put on your repeats at your GP to make it easier to get.

Carol.

[beetle]

Although I agree that you should be allowed to see a consultant when you feel you really need to but while I had ET and was generally plodding on ok with rises and falls in platelets and meds adjusted accordingly I rarely actually saw the consultant unless I specifically asked to see her. Now I am struggling with MF I see the consultant all the time. I figured that the consultant generally sees the more complicated cases and while I was less of a priority I saw a member of the team. This was fine with me but all the team spoke English! I have had problems with doctors who have difficulty with the computer systems and communication and agree that this is unsatisfactory. In our clinic another consultant generally covers for my consultant when he is away. Continuity of care appears to become more of a problem the bigger the centre is.

I hope you get your prescription sorted and get to see your consultant as soon as possible

Best wishes, Jan

[redumbrella]

Most of the time that I attend Clinic I see one of the team, on only one occasion did I come across a Donkey ( this is probably unfair to donkeys) That said on the occasions I asked to see the Consultant it was never a problem.

Maybe it is time to put your foot down and demand to see your Consultant.

Best wishes

Garry

[Mallard]

I was seeing the same consultant for 5 years, then suddenly he left and locums replaced him. They were dismissive, ignorant, and indifferent to my ET and symptoms. My platelets fluctuated a lot and they didn't feel that should make a difference to how I was feeling. Then in March this year I had a double Pulmonary Embolism. Suddenly I was changed to an MPN specialist, who by the way is fabulous and has a lovely bedside manner. In his letter to my GP one of the reasons stated for the clots in both my lungs was uncontrolled ET. I knew I was being neglected and I suppose this now confirms it. Such a shame you have to nearly die/or suffer disability before you are taken seriously. Im a great advocate of the NHS, but I really do believe it's in crisis with the quality of some of the health professionals employed at the moment.

[JackLina]

This reads like my own rants! I DO see my consultant and get similar 'service' to your experience with the 'team' members. No understanding of the condition and there to give out prescriptions! I agree with your take on the situation but it seems that good consultants for this condition are very rare. I get the impression they know very little and seem content to let the patients do the research! Hope it improves for you. I went to see another consultant 50 miles away and he was wonderful and my usual one has not got over the fact. He actually brought up the fact a couple of times at the last two appointments and included the fact in a letter he sent me (after many requests) about my blood results. the first I have ever received since being diagnosed in January! xxx

[Fionnuaghla]

Hi

How awful for you to be treated in such an appalling way. It seems that for you the place which we hope to associate with healing is causing you so much stress. It is so bad that our care can be compromised by the facilities, the available expertise and general understanding and good manners in a hospital. I am so sorry to hear your experience which is wrong on every count and can only hope that it can be resolved.

Warm wishes xxx

[Inca]

I feel that I am so lucky when I read of the upsets so many of you have.I have had the same consultant and Drs for my P V since diagnosis 8 yrs ago.

My usual Medicin General has unfortunately just retired as she is quite ill ,

I really feel the loss...tho the partner in the practise is excellent too,at Xmas we get a new Dr ,who thank goodness is knowledgeable in MP Ns.

We are coming to U K tomorrow..unfortunately my results this week are not good and up goes the Hydrea to 3 per day.....was determined not to cancel visit to our daughter.Really hope things improve for you all.Sally

[lizzziep]

I suddenly feel very lucky that the treatment I have received over the last few years has been so good! I saw the consultant a few times in the beginning, after my results settled down I have seen the Specialist Nurse, if I had a query she would pop next door to ask the consultant. I see the consultant occasionally, in fact I saw him at my last visit, as the nurse was on holiday. He is very nice, as are the others on his ream! I have no complaints, just occasionally blood results are held up in the lab, So I thank all at my hospital for my good care. (although my next door neighbour has received appalling care at the same hospital but a different department!)

[Hidden]

Most hospital outpatient appointments are worded that you will see the consultant or on of their team. If everyone attending outpatient clinics was only prepared to see a consultant then the NHS would cease working. I have found that it helps to flag up worries in advance which might push you towards a consultant rather than a reg or senior reg etc.

[jillydabrat in reply to Hidden]

I would be happy if I could see someone who spoke English and didn't treat me like they would rather be anywhere else than there with me. I certainly don't think I am being unreasonable wanting to see my consultant once a year.

[Hidden]

I am not judging whether you are being reasonable or not. I am only pointing out how the system works and it’s lack of capacity through staffing deficits. If you are unhappy with your treatment you can go to PALS at the hospital or register a formal complaint.