Not Happy

Hi all after 6 months on steroids following a real bad time on Cimzia, I was advised was going on tocilizumab. So went to see Rehumy nurse beginning of October I was asked how I was doing, general chat until I pointed out I was supposed to be there for the tocilizumab. She looked confused then said she would nip in to see my specialist. She then came back said no problem letter was on his secretary's desk and I would be contacted in next 14 days to start on the new drug. The 3 weeks later I phoned Rehumy nurse to say not heard anything. She apologised said she would chase specialist up. 2 weeks ago received a letter advising me I attend Rehumy dept next Tuesday the 18th for the infusion. I though at last, having numerous flare ups, eating anything that stands still for 10 seconds because of steroids. However this morning I receive a copy of a letter from the NHS Trust. Thanking my specialist for his funding request dated 12.11.14 three days ago for the drug. It goes on to say they are considering his request, however it also states that should I receive the drug before consent is given then the hospital will not be reinburst for the drug. Is this just a paper excercise or am I going to be turned away on Tuesday. So as you can see I'm not happy.

13 Replies

  • I'm not surprised that you are not happy, this is unacceptable treatment. I know you don't want to antagonise the department that you rely on for treatment, but it sounds as if a formal complaint may be in order. At the very least, you need to be sure that your Tuesday appointment is definitely for your infusion. An urgent email to your consultant might be a start, to clarify the situation. Remember to keep a copy. Followed up by a phone call if necessary.

    I suggest you write down the series of events, with dates and names of people you spoke to. If you do make a complaint, you will need this information as a basis.

    I do hope that this can be sorted out asap. Keep in touch! M x

  • I agree with Mavis & would record the series of events, who informed you that you'd be starting on tocilizumab in October when & where & your experience when you presented for your first infusion & email it to your Rheumy's Secretary asap, so it will be there for her to open on Monday. They've misinformed you (to put it politely) & you at least deserve clarification before Tuesday's appointment that you will be having your infusion on Tuesday otherwise I presume it will be a fruitless visit. If you do decide to have your concerns recorded try not to write in the the negative regarding treatment, word it presumptively, you need to be assured treatment will start pdq. They surely realise that they're in the wrong as it would appear that they've messed up by not completing & submitting the original funding request. Meantime you've been left on steroids, which while helping doesn't treat your disease & as a result has caused issues which could have otherwise been avoided. The least you could expect is to be fully informed of the situation, admitting their error instead of being told a bunch of lies & an apology, basically. They've been most unprofessional in dealing with the situation & if it wasn't for the fact you're in need of their services I would be tempted to report them. It may be worth informing PALS, & cc them a copy of the email though so they're kept I the link should treatment be further delayed.

    I'm not surprised you're not happy, I'm not happy for you, you may have gathered! I hope you do start it next Tuesday but the way things are in the NHS I wouldn't expect them to risk non payment for however many months of treatment should consent be denied.....though they jolly well should if only for face.

    Do keep us updated Shazbat.

  • Well I received a phone call today from my Rehumy nurse, she was responding to my request for further details on the schedule for my drugs. I explained I had not asked for an update, I had asked if my appointment was still happening tomorrow for the infusion. She was clearly shocked asked who had sent me an appointment. So I explained I had the blood tests etc, I had received calls from the ward sister about my weight. Then I receive this letter about funding and the fact that funds were not requested until last Wednesday. She said the specialist had requested the funds many months before by email. So when I asked for a copy she said they couldn't find it. She also said she would have to cancel the appointment with the ward. She said the panel is meeting Wednesday and if sanctioned I could have the infusion at end of week. So I asked what if they say no. She said it's not no it's just referred to another committee. Im fed up but I will come out fighting if it's not sanctioned on Wednesday. I will keep you updated.


  • Hi Shazbat. I am so lucky where i live. I keep reading on here about people having to wait for decisions about medication for RD. I am under Walsall Manor hospital i had tried many meds/treatments nothing seemed to work. My rheumy nurse went in to see consultant came back with 3 different treatments told me to go away read about them & decide which one i wanted to try. A week later i went back chose tocilizumab Roz rang day care unit & booked me in for the following Monday. 2 years later i am still on it . I know it costs around £1000.00 a time. Its discusting people have to wait other conditions/illnesses dont have to wait just shows how this horrible illness is not taken seriously. Hope you get it sorted soon, keep on at them. Alison xx

  • I am at my wits end with Rochdale Hospital, the conversation with the Rehumy nurse on Monday ended with her cancelling my appointment to go for the infusion, but she promised faithfully that the funding panel were meeting today and no matter what the outcome. She would phone me to let me know the what had happened. So I waited from 8.30 this morning until 5.30pm and despite her promise. There was no call to let me know the outcome. I am so angry now I submitting a complaint. For 12 months I have not known if I was coming or going. At one stage I believed I had a terminal lung disease because I could not get an explanation about a possible diagnosis written in a letter to my GP. It took me six weeks and a written complaint to receive an explanation. I was promised this would not happen again. At my meeting with my specialist in May he promised that He would seek funding for my new biological. I went on an extended holiday, I was prescribed steroids and told when I came back I could begin the new drug. I'm now back were I started. My appointment was 10th October, the funding was not requested in May or October, it was requested 12th November, 5 1/2 months after my meeting with my specialist. And I still do not know if funding has been granted.

    West Pennine Health Authority have a lot to answer for it is absolute chaos. I was even sent a date for a scan on my shoulder despite telling them 3 times I was out of the country. When I failed to attend the scan they wrote to my GP advising her I had failed to attend my scan therefore my surgeon had referred my case for a shoulder operation back to my GP. They said when they merged our hospitals and made clinics of excellence that things would improve. But it an utter shambles.

    And we are caught in the middle.


  • I'm so sorry to hear you didn't have your appointment or infusion Shazbat. I would do exactly as you intend & lodge an official complaint. I don't know if things have changed recently or if it's just the Rheumy Dept but Rochdale Infirmary used to be a good hospital.

  • I totally agree about Rochdale hospital. The West Pennine Trust have ripped the guts out of it. I grew up in Oldham, that hospital was a great hospital but went downhill, you are treated like cattle. So when I moved to Rochdale 14 years ago the difference was amazing, however West Pennine decided to take A&E away and many other services. Rochdale now looks neglected and desolate, it's disgraceful what they have done. They merge services and the result is chaos. A simple scan can be a trek to one out of numerous hospitals. It's cold and uncaring and all based on money.

  • What a shame. I was born in Birch Hill hospital & not been to Rochdale for 30 odd years but still have relatives in the area, mostly cousins but we keep in touch by email hence not having been since we returned to the UK either.

    I hope you're as successful as last time you needed to complain. Whilst steroids are great they're not the answer long term & you need proper treatment.

    Do keep us updated how it's going. x

  • Hugs Shazbat .. this is awful. Please do let the hospital management know your complaint. You have outlined the issues here in good detail so if you tell of the unsatisfactory incidents in the same professional way you have here, then I hope they will understand your disappointment and upset. I know I was in a nervous state when I waited six weeks longer than promised to start biologics last year. Long story but my GP was ready that week to drive me down to the hospital itself and put me in front of their noses at A&E and tell them waiting too long without a med that was working for my RA had rendered me very unwell, in constant awful pain and immobile/bedbound. I heard I could start the biologic two days before my GP had asked me to go see him to do this, so managed to get the med delivered almost straight away and had my first shot at the hospital a couple of days later. It was a total breakdown of communication but especially between HaH and hospital pharmacy not to mention tests not being done and xray lost. I know how it feels to be waiting and ready to start a new med and going downhill. I hope the steroids have tided you over. They would not prescribe any oral steroids for me. They just never have wanted to .. never been an option. I had had a knee injection previously a couple of months prior but it was wearing off at the time due to start the biologic. So to be waiting as long as you have ... just unbearable. I hope the approval comes through very soon. It should not take longer than 2-3 weeks I was told. Good luck. NK xx

  • Hello Everyone I finally got my drugs. The nurse phoned me yesterday, so we have lift off next week. Thanks for all your support, I will update you on my progress.

    Best Wishes.


  • Blimey what a carry on. Been waiting for approval for tocilizumab since feb I think. Been on steroids now for ages. Got app next week with rheum team. Not the first time I've had problems. Last time I went to my MP!

  • I'm so sorry Kerpag. I finally go for the drugs tomorrow. It's disgraceful the amount of time we have to wait. I have worked since I was 16 I took early retirement at 55. Have never been unemployed in that time and I still pay for a pre payment certificate despite having RD. Asthma, COPD, and high blood pressure. I understand there is a cost, but it costs more money to deal with the complications of the disease than the drugs themselves. I hope everything goes well for you. I will let you know how the infusion goes.

    Take care


  • Hi all well I finally got the drugs. I was worried about side effects, I was expecting some effects while the drug infused. Good news nothing, I did what the blogs advised I drank plenty of water. The infusion was easy, I was a little bit tired after so had a nap when got home, but no other side effects so far. The new Rehumy wards at Rochdale are fantastic. Sister Josie made everything easy. I will keep you updated with my progress.

    Thanks to everyone for your support this is a fantastic site. Kerpag I hope your sorted please let us know.

    Take care Shazbat

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