Bad news

As5567

I have received a letter telling me that my care has been transfer to another hospital trust, I also had an appointment letter from the new hospital. The 'earliest' appointment they could give me was Tue 1st of oct!

I have made a few phone calls and it seems like neither of the hospitals care. It seems like I will be left without my meth and infusions which is going to possibly going to mess up not only my health but also my future career as going back to the way I was I won't be able to return to university.

I have been looking at my options online and it seems I'm stuck, if anyone has any advice or something similar happen then help would be appreciated.

kentishlady

Hi. Sorry to hear you are being messed about. You must be feeling very fed up. I do hope you can sort something out.

If you find you are not able to return to uni, have you thought about the option of the Open University? I've studied a Degree course with them since I retired from work, and really enjoyed it, although there is a lot of hard work involved, but perhaps that is something you might consider.

Could you ask the hospital to let you know if they get a cancellation before October as that might help you. You may need to do a bit of kicking and screaming, but it might be worth it!

Take care.

Beryl

barbara12

This is awful news for you, can you get on to pals and explain there is know way you should be left without the meds..pals are volunteers that help patients and are very good...it might come under a different name in your trust ..please let us know how you get on x

19smp59

This is just awful and good advice re PALS, give them a ring. You should not be without your medication, not only because of the impact on university but the impact on your health.
You need the appointment bringing forward, either by your GP getting onto the hospital or (and I am sure they will) PALS explaining your position.

Best of luck
Suzanne x

DebbieT

That's terrible!! I'd go & see my GP in ure shoes & ask them to fight the hospital on ure behalf ... Any GP worth their salt will want wots best for their patient & step in to help you. At the same time I believe going thru PALS is definitely worth doing too. Having 2 avenues trying to help you can only be a good thing!!

Take care ((((hugs)))) x

phoenixoxo

Hi there,

About four years ago, I experienced a break in services, which made for a very difficult six months or so. To my mind, it's unacceptable to be left in the lurch like this.

There's great advice on this thread, re. asking the hospital to bring your appointment forward and getting in touch with PALS. My first move would be to contact the GP to ask what he/she can do – not just in terms of dealing with the hospital, but prescribing something to tide you over the worst of the pain in case it isn't possible to resolve the delay in treatment. By all means mention your concerns about not making it back to uni, and anything else that might be affected by all this.

Good luck with it all and let us know how you get on

Best wishes,
Phee

As5567

Thanks all, just seem to be running around in circles at the moment. I have had a nice chat with my rhumey doctor who has said he's going to ask around and see what can be done.

I have also found out that the new hospital they want me to have treatment at is 28 miles drive! Compared to the current 16 miles drive.

As for my medication, neither hospital seems to want to take action or responsibility, they both point the finger at each. I really don't think the admin staff understand how much of an impact missing treatment would be on my health, and it also scares me with the fact im currently taking antibiotics for a bladder/kidney infection and nobody is going to seeing me about this now other than my gp who is more than useless when it comes to any type of illness or infection for people on these types of drugs.

I really do hope I can get this sorted soon

dreamdaisy

Hi, do you have any idea why they have transferred you? I have a number of hospitals within my area but no mention has ever been made of moving me to another. :? I hope your kidney trouble etc is clearing and yes, GPs don't know much about people like us on drugs like ours but there again why should they? They are not specialists as such. This break in rheumatology treatment has come at a very bad time for you, there's no doubt about that. DD

As5567

dreamdaisy wrote:

Hi, do you have any idea why they have transferred you? I have a number of hospitals within my area but no mention has ever been made of moving me to another. :? I hope your kidney trouble etc is clearing and yes, GPs don't know much about people like us on drugs like ours but there again why should they? They are not specialists as such. This break in rheumatology treatment has come at a very bad time for you, there's no doubt about that. DD

The reason they have transferred me is all down to money, I have been seeing my current doctor since I was about 10 years old. My local NHS trust didn't offer support to children with Arthritis so I was transferred to my current hospital which is in another NHS trust.

dreamdaisy

Oh, I see. I don't know too much about children's support services for arthritis because I never needed them but it would seem sensible that they need to transfer you to an adult set-up now. It would be good if every hospital could cover all conditions and age-ranges but like schools they can't cater for everyone. DD

Boomer13

Hi As5567;

It's too bad your current hospital can't just extend your visits for a few months so you don't have to have an interruption in your treatment. It seems that would have few consequences for them when the current plan is going to have such huge consequences for you. I don't know the rules, but perhaps your GP could figure this out for you. I hope so. Wouldn't it be nice if the priority was patient care? These agencies need to work together so fewer patients fall through cracks in service.

It seems like a problem which should be easily fixed.

Best wishes,
xxAnna

phoenixoxo

Hi again,

I agree with Anna – this sort of problem shouldn't present so many complications. Unfortunately, it's my experience that it does, due to confusion about roles and responsibilities, as mentioned above. 'It's the system,' they like to tell me.

I hope very much that the rheum is able to sort something out for you. When this happened to me, I requested that my GP take over my care plan, since there were no other options available. Of course he wasn't able to prescribe the same treatments as my consultant, but he came to my flat every month to give me an intra-muscular depomedrone injection, so I was able to continue work at least. (By work, I mean sitting up in bed in my PJs, struggling to write properly, dozing off every half-hour or so… huzzah for self-employment.)

Also, it sounds like your infection needs better monitoring. When I've had infections, it has been the GP who's dealt with this, prescribing antibiotics and checking up on me at the end of the course, organising blood tests to ensure it's safe for me to resume arthritis treatment. Well, to be honest, I have to arrange most of this. Sometimes it feels like an extra job. Anyway, sorry for the mini-rant! I hope things improve soon

Best wishes,
Phee

bubbadog

I would contact my G.P's secretary and see if they could get your g.p or if they could call and put the wind up them for you. Explain that your going to go without meds and it will effect your Uni. I've done it several times called my g.p's secretary and asked them to assist me with appts!! Good luck hope you can get something sorted.

woodbon

Hi I'm so sorry, all this silly messing around just for the sake of keeping the figures down. I fail to understand the logic of it and I feel so cross on your behalf, as you'r young, have your life before you and need to have the best treatment available.

I know for a fact that the amount of waste goes on in the NHS spending, for the sake of yearly budgets. Its a mad world.

I hope that you can manage to get treatment before October, it sounds so hard for you to miss the opportunity, but if you do have to miss a year, maybe you can do what someone suggested and look at OU courses. Also, talk to your university and see if they can offer you anything, maybe a short external course to cover your time away and give you something worthwhile at the end, its worth a try!

Good luck and I hope all works out in the end, Love Sue xxx

As5567

The problem with my current university course is that this year will be my final year, and I'm only able to suspend my studies for 1 academic year which is coming to an end in Sept. My only choice if I'm unable to get my treatment is to bite the bullet and just try to attend as much as possible.

daisyday

Hi, I'm new here and can understand your frustation. I really struggled through my final year with health problems when really I should have deferred but didn't want to put my life 'on hold' any longer.

Just wondering whether you've contacted the student welfare office at your university. They usually have someone who can help students with disabilities and make their path smoother - extended deadlines for assignments, non-attendance permissions due to health reasons etc. Someone might also be able to record lectures for you, share notes. Some students volunteer to do this, a sort of study buddy.

As5567

Finally getting somewhere, it seems that A LOT of information has been miscommunicated. I had a rather good phone call with the rheumatology team today at the new hospital, I will hopefully get my medication on time and will find out more in the next few days.

phoenixoxo

Hi there,

This is great news! I hope everything works out for you

Best wishes,
Phee

Boomer13

That is good news for you! Fingers figuratively crossed for you that they figure it out in your favor.

Best wishes,
Anna

As5567

Had an appointment at my current hospital today as an emergency, back went pop and now everything hurts.

As it was an emergency appointment I didn't get to see my usual doctor but I got to see a newly qualified consultant who was very helpful with the back and hospital move. I explained my situation and he thinks that I have some very strong and valid reasons to continue my treatment at the current hospital. He is going to get back to me regarding my medication so hopefully I will be able to get my infusion next week.

stickywicket

I hope it goes well for you. Good luck!

Megrose489

Your emergency could turn out to have a silver lining. Hope the new consultant is able to work things out for you.

Meg

phoenixoxo

Hello As5567,

Sorry I'm a bit late to this thread

Sorry also about your back. It sounds very painful. Good news, however, that you came across someone who might prove useful. I hope you'll get your infusion.

Best wishes,
Phee

As5567

Feel like I'm banging my head against a brick wall, doctor at my current hospital is happy for my care to remain within that health trust, new hospital are STILL trying to force me to make the transfer as there is no "clinical reason" for me not to be treated closer to home.

In Wales it seems the Welsh government have come up with the assumption that everyone wants to be treated as close to home as possible, so recently they have changed the way things work and removed patient choice of hospital.......

So far my experience with the new hospital is just as I remember. Dirty, run down, over crowded and very poor facilities. I have responded to the most recent letter from the new hospital telling them once again why I don't want to have my care transferred.

My GP has also wrote a letter highlighting my concerns, he also agrees that my care is best left at my current hospital for many good reasons. I just seem to be running around in circles because someone decided that I would be better off getting care closer to home (Oh and not to mention the fact that the actual hospital that I would be receiving my care at is a further 6 miles than my current one!)

frogmorton

Gosh Ash

This makes no sense at all :shock:

It's better because it's nearer??? How does that work exactly??

I do hope that you can keep strong and with your GPs help stay where you are known, (and know them).

love

Toni xxx

stickywicket

As5567 wrote:

In Wales it seems the Welsh government have come up with the assumption that everyone wants to be treated as close to home as possible, so recently they have changed the way things work and removed patient choice of hospital.......

(Oh and not to mention the fact that the actual hospital that I would be receiving my care at is a further 6 miles than my current one!)

I don't follow this. You mean the policy is that everyone should be treated in their nearest hospital but they want you to move to one further away?

If you are happy where you are and the docs are happy, can't you just stay? Might PALS help?