Good morning all. This is something that has been playing on my mind so thought I’d get it on to paper.
At my last appointment in August, the consultant explained Patient Initiated follow up appointments. Now this has sent me in to a bit of a tiz! So, yearly bloods and a call from the CNS and I can call for an appointment if I’m ever worried. Now, in my logical mind this curbs my worries about being discharged back to my GP for check ups. However, the regular checks and the consultant feeling for lumps and bumps helps me in this journey. The lymphoma has never shown in my blood so that doesn’t reassure m I feel really selfish because I know how much pressure the NHS are under and don’t want to add to that. But so much of this journey affects my mental health and these regular checks really help with that. I don’t know if I have a choice in the matter, I was told to think about it but in the follow up letter it sounds like that is the plan. Just wondering what others thought. Sorry for the ramble!
Hello @Nichola75
I hope you don’t mind me jumping in and replying to you from a Nurse perspective. I’m sure you’ll get other replies too.
Firstly, please do not feel selfish in any way saying that you don’t want to add to the NHS pressure. How overburdened the NHS is, is certainly not your doing and you should not let this stop you from accessing or asking for the correct care and follow ups. You need to advocate for yourself and feel comfortable with your treatment plan.
The Patient-Initiated Follow up is becoming more common, not just in Haematology, but lots of areas of Chronic diseases. There are a couple of reasons for this; one - very rarely is a relapse in disease found at an appointment. Usually a patient will know their own bodies and have a feeling that “something is just not right” and contact the department they are under, as soon as they feel something is wrong/different. Two, this does lessen the patient workload in departments where patients have chronic diseases and changes aren’t expected for many years. However, the door does remain open for patients on a PLF plan to be able to call or access the team, they are still ‘in the system’ and can access blood tests or an appointment if they are worried or have symptoms.
It’s also known that regular appointments can provoke unnecessary anxiety in many patients that have very stable disease, as well as patients needing to travel, take time of work, pay parking fees etc, etc. It’s difficult to balance this with those, like yourself, that get reassurance from the appointments.
Please know that your team wouldn’t put you on the PLF pathway if they thought you weren’t suitable. There is quite strict criteria of patient suitability for putting someone under this treatment plan, so in a way, this is a good sign for you (I know you don’t feel this way though).
You shouldn’t be sent away without any instructions or a detailed letter on what to look out for or when to call the Haematology Team. All patients should have information and guidance, taught how to self examine, as well as their GP getting a letter regarding what to do if the patient attends the surgery. Do ask your CNS or Consultant about this, and possibly ask for information well in advance in case anything is unclear to you.
Also, whilst this is recommended, it doesn’t mean you have to go along with it. If you explain that the regular check ups help your mental health, your team can address this with you and hopefully you can agree something you are comfortable with.
Please call the support line if you want to discuss any of this, or do call your CNS and let them know you have concerns (you are not adding to their pressure, they have the information and are there to help 
)
I hope some of this makes sense.
Bestest wishes, Heidi.
Good evening @Nichola75, and everyone else. I’ve not heard of this initiative but I do understand your concerns with regard to adding to the NHS’s pressures, or feeling a nuisance. Also, I feel that the “in-person” appointments, where you can interact with everyone from the receptionist, through the “weight checker” and the nurses, along with the consultants, can give a lot of reassurance as well several pairs of eyes who may spot something that you have dismissed within yourself, if that makes sense.
I know what I mean, but not too sure that I have adequately or clearly expressed it in words.
Stay safe, take care, carry on smiling and remember to be kind to yourself.
Jimbo165
Hi @Nichola75 thank you so much for posting this it is a fascinating dilemma and you have added an extra dimension to it by sharing how much of your journey affects your mental health and that regular checks help you.
It was about 5 yrs when my consultant, out of the blue, said he was discharging me back to my GP with the option of being fast tracked back to haematology if anything appeared amiss.
I am useless at thinking on my feet and I was outside the hospital before I knew it.
Then the emotions and thoughts kicked in and I felt tearful, angry, abandoned, shocked, a fraud (would I have to leave our forum???), not consulted, how could I tell people etc, etc.
However after time and reflection I thought about this and my GP surgery is just down the road for my 6mthly blood tests, I have got lovely nurses there and my GP is wonderful. If in between I feel anything is not right or I have lumps and bumps appear then I can go straight to my GP and we have a mutual respect for each other.
This is a very personal response and we are all very different and have very different medical services.
@Nichola75 I did not think you rambled but you ramble as much as you want to.
Perhaps be ‘pleasantly assertive’ and jolly well tell your consultant how you feel ( like I should have!!)
This is a very non medical reply.
Be very kind to yourself
It does make sense. It really has helped me to organise my thoughts and think about it from different perspectives. Thank you so much for taking the time to reply in such detail X
You have expressed it really well @Jimbo165. All helps me to organise my thoughts and think about how I put this in to words, especially when I’m nervous. Thank you x
Thank you so much for you reply @Erica. You have made some really good points about the positives but also how I need to be assertive as well.
I’m rubbish at thinking on my feet too, hence posting so I can think about it before my appointment in the new year. It’s all to easy to go with the flow and not say how you really feel. All of the responses have been so helpful. Thank you so much X
Hi Nichola,
This sounds like a good option (if it suits the person it’s being given to, we all like different ways of doing things don’t we and different things are better for different people)… I was discharged back to my GP for my Chronic lymphocytic leukaemia (CLL) over a year ago and I must say I prefer the idea of what was suggested to you, I might look into it and see if I can get something similar. I find the lack of having someone overseeing my case difficult and it can definitely affect one’s mental health. My GP leaves it up to me to know when to book my bloods and follow up for the results, I feel totally on my own with it all. Thanks for alerting us to this new approach.
Best of luck with everything, thinking of you,
Firefly x
P.S. Don’t be forced into something that doesn’t suit you! It’s your health not theirs! If it isn’t showing in your blood I can see why you might want more check ups. Tell them what you need x
Hi @Firefly. Like you, I would find it really difficult. Let me know how you get on. It will be interesting to see if it’s something you can request once discharged - @Heidi_BloodCancerUK?
Thanks for taking the time to reply. It really is helping me and I feel less anxious just talking about it with you all X
My consultant is amazing and my husband thinks he will listen. Like you and @Heidi_BloodCancerUK have both said, I need to have the discussion - which I will - and I have until February to organise my thoughts. I’m sure I’ll be bothering you all again closer to the time. How are you doing @Firefly ? X
Hi everybody. Just thought I would give you a quick update following my appointment.
My consultant said he wanted to move me over to the PIF and I asked if we could discuss it a bit more. We talked things through. He said unless I try the new system I won’t know whether it’s the app that’s making me anxious and that I could feel better about things knowing I don’t have to go and see him. That made sense.
So , we have agreed he will give me another 6 monthly appointment but if I think I’m ok I call, cancel and give the new system a go. If I do that and it then causes me more anxiety I can call and go back to appointments.
I went with armoured with all the information so was able ask questions without getting tongue tied, and I didn’t cry! It really helped talking through things on the forum.@Heidi_BloodCancerUK , he was really attentive and reassured me in the way you said he would. So, I will see how I feel in 6 months.
A big thank you to all of you. I don’t know where I would be without my forum family and friends X
Wow, @Nichola75 gosh a lot to think about for you and change is the unknown that is scary and anxious making.
So glad that you followed your own advice and went armoured with all your information.
Please do keep posting how you are doing and if you don’t feel OK, perhaps it is straight back to your consultant, or specialist nurse if you have one.
Be kind to yourself and sending you lots of virtual hugs xxxx
Oh @Nichola75, I’m so sorry I missed your original post about PIFs and the anxiety that can build up in between appointments. Haven’t heard the word “tiz” in yonks, thank you for that blast from the past! What a great descriptive term.
I really empathise with how you described regular checks being helpful, despite my being under the care of a different healthcare system and having a different blood disorder to you. Wish I’d seen this thread of yours sooner as I could have offered some tricks that help with my own anxiety. You’re so supportive of others here and I’m sorry I missed a chance to support you in return.
Glad that Nurse Heidi pointed out that you personally are not a burden to the NHS. I mean, we are their bread and butter—if the NHS didn’t have patients then it wouldn’t get funding. But isn’t it hard to accept care when it makes us so worried? I’ve had to fight with my working class upbringing telling me I should live with it, get over it, why should I seek care when there are others worse off and all that internalised negative self-talk to engage with my own treatments. The fact that we have these chronic health concerns feels like the worry stays live and on our minds the whole time in between appointments and we never get a break from it. Good for you for figuring out a way to offset some anxiety, I say!
Like you, I also prefer having regular appointments and access to my test results online as I can make some sense of them and that pacifies some of my anxiety in between. Sounds like the PIFs can help fill in those gaps a little and keep you under the watchful eye of a specalist ready to bring you in should you need to when perhaps not much changes physically.
It’s great that you’re trying the app out for a bit. Habits take time to become habitual, after all, and maybe those 6 months using it will take some of the edge off any anxiety 
I don’t know if this will help
I decided I wanted to do phone consultations as going to the unit with no mask wearing was causing me great anxiety.
I was feeling fobbed off at face to face app with some of locum consultants one kept telling me he had sicker patients to see and wasn’t happy having to wear a mask.
I now have a lovely consultant who was happy to do telephone appointments.
I have all the tools blood pressure monitor, temp guage, O2 monitor, scales and give her the readings.
I was also confident in telling her about my pain I was having and she was straight onto MRI and PET scan.
I have now moved to 3 monthly app but she has put me as low threshold so my team know I’m to be seen before that appointment if needed
Hi @Duncan.
‘Tiz’ is one of my favourite words!
Thank you so much for your reply. As with the other replies, it helped a lot.
The ‘get on’ with it attitude was the way I was brought up to and I hate feeling like I’m being a pain.
But, the appointment was positive and I’m glad I have options.
Thanks again for your support and I hope you are doing ok 
Hi @2DB.
Thanks so much for your reply. It’s good to hear how things are working for others and gives me a further insight in to my options. That’s what I love about this forum, the sharing of experiences.
I’m glad it’s been a positive change for you and I hope you are well
It’s my pleasure, dear @Nichola75. I’m really glad the appointment went well, and I totally agree that having options also helps. Glad to hear that the NHS is modernising somewhat too!
I’m doing well, thank you! Just had a brisk stroll to the supermarket and back with the hound complaining beside me that he’d rather be napping. Sorry, who’s the fatigued one?!
Thank you yes I’m doing well
Just to add my blood pressure readings have never been better at appointment time 
Your doing great sorting out the best way to deal with appointments I’m sure you will find a way that’s best for you good luck 