Table 3 Quotations Exemplifying Issues In Specific Areas Of Care

Specialist Referral

I was diagnosed really soon because I put on a lot of weight and at the time I was on a tablet to stop smoking. I thought it was the tablets ....I went straight to the GP and he carried out the rheumatoid blood tests. So I was diagnosed pretty early so I felt quite lucky. (Patient 32)

'If they think it's an inflammatory arthropathy, most GPs will send it to the appropriate people, maybe not quickly enough.' ( Consultant Orthopaedic Surgeon)

'I used to go to the gym so it took my GP nearly a year and a half to find out that I had RA and it was only because I demanded an x-ray... (Patient 37)

'So initial diagnosis is key and quick referral putting the right things in the letter so that when we get the letter we can see what they [GP] think it is...there's huge variation then in that.' (Consultant Rheumatologist)

'If you don't do the blood test the hospital would be absolutely overwhelmed. If everybody [patient] who thought they might have rheumatoid we refer to hospital, the system would grind to a halt... (GP1).

'So we normally do blood tests like RA Factor and antibodies and when they come back and yes the suspicion is that they might have RA, then we refer' (GP2).

Routine follow up

'Especially if it's a period of time like 6 months [between appointments], you know that's a long time...they should give you a thorough examination, send you for x-rays or god knows what, just to see how you're coping.' (Patient 33)

'It depends what they come in with. You don't always have time.... I mean if they have everything at once it's really difficult to address every issue in that time slot. '(Nurse Specialist)

'He tries to help me, he is a really understanding doctor. He understands how I feel. I can really talk to him. He knows how I feel. I tell him where I am having the pain. I relate to him.' (Patient 22)

'I think the follow-up in rheumatoid has changed a bit in the last of couple of years from our perspective in that with the pressure on follow up slots being so great, the interval between follow-ups is much longer and it will be pushed out to 6 months or a year' (Consultant Rheumatologist)

'I have to wait a long while to see the doctor when I got an appointment for a certain time. I have waited one hour and a half, you never go in at the appointment time'. (Patient 15)

'I'd like the GPs to take on blood monitoring, I think that is a complete waste of time for us to look at each single blood result for 100 of 100 of patients and so I would like to have blood monitoring with our support to be out in the community. Patients would prefer that as well'. (Rheumatology Specialist Registrar)

'I think sometimes the specialists haven't got the time to give you that long chat that you need, whereas the nurse will. You know, not that the specialist doesn't want to...' (Patient 31)

'... so we sort of monitor them [RA patients] from the practice... just doing their bloods, seeing everything is in order and there is no sort of active flare up or anything and we are happy to do that if we get a sort of proper protocol and guidelines in which we can work' (GP 10).

'My GP, I have... I think I have lost respect...he hasn't really served me particularly well. I have to 'play act' when I see a GP. So I have to pretend that I am really ill and about to die before anything actually happens ... I don't have a lot of faith in them'. (Patient 24)

'.... there is no financial incentive and actually I don't agree with the financial incentive, but if you suffer from an illness that is not included in the QOF, I think there is a degree of neglect and ahm... there is no motivation of the practice to think about that [RA]' (GP 4).

'Well my GPs quite good. If it wasn't for my GP half the things he told [advised] me what to do. If you come to the hospital, you ask how you do this, nobody tells you.' (Patient 30)

"In the end I got so mad with them (GP) I started shouting and I said " you know, I've got to come up here and ask you for blood forms every month!"(Carer 8)

'Doctors... I think they get tired of me (carer) when I attend the consultation.' (Carer 5)

'I mean obviously the waiting times can get on your nerves.' (Carer 11)

Access to care in times of need

'If the nurse thinks I am not all that good, she calls the doctor... and he will come and see me right away' (Patient 1)

'.....I like the patients to have better support...seeing someone in six months...is not very helpful...they [patients] just struggle on... I have no follow up appointments...the GPs don't know what to do you see, so it is a dreadful situation... we are under-resourced. I don't think that is the way to deliver it [health care]... knowing that we can't actually do that [provide emergency cover]'. (Consultant Rheumatologist)

'Patients can now 'choose and book' any hospital which is extremely confusing for GPs,... because I think it is extremely important that the patients go to local hospitals and I am familiar with the consultants and the system there.' (GP 9).