Getting treatment - NHS. This isn't right, is it?

[mineofuselessinformation]

Sorry for the long post.
DC1 (veteran of a very nasty autoimmune disease which is now thankfully in remission), has now been diagnosed with another, which is gut-related....
They were diagnosed on the 9th February.
Besides some steroids, which have now been upgraded to stronger ones (with more side effects), they are still waiting for appropriate treatment (and had to prove they had the former disease themself before treatment was approved - apparently the hospital had no record of it ).
I'm beside myself with worry.
The treatment was ordered weeks ago (immunotherapy via self-administered injections), but is still hasn't materialised.
DC is very much of the mind of not wanting to 'rock the boat', but is also equally worried, especially since they have been told their appendix may need to be removed as it's severely inflamed.
I don't know what to advise / what to do.
It's very difficult to sit back and watch a (grown) child go though this.
It feels so wrong to me.

I would suggest your son phones up the medical secretary to the consultant in who's name the medication has been ordered...they are the fount of all knowledge and are awesome at tracking down what is going on. Be prepared for a delay as many NHS trust secretaries are mixing WFH and in hospital work and he/she may need to be in the department to sort it out.

If the treatment is adulimubab it can take some time to arrive as supply chains have been disrupted recently.

Hope he responds well

Are you in the U.K.?

I know my husband’s immunotherapy has been delayed by Covid. Horrendous to watch and wait, but can’t be helped now.

If dc can afford about 150/200 pounds.. go private. They will assess, prescribe, organize treatment properly and then put dc back into the NHS with full documentation and about 6 months to two years of faffing saved

You very need to keep pushing I'm afraid OP. Managing care for multiple family members with serious long term conditions has taught me that being passive and 'not ticking the boat' leads to nothing but long delays and missed opportunities to nip things in the bud.

It's hard, but very necessary to be a pushy parent/partner/sibling. Always polite and reasonable, but always persistent.

Write to the hospital PALS dept (patient advice and liaison) and ask them to look into it for you

Speaking to dc currently.
Yes, it's adulimabab. It's now 5 weeks since they were told it was prescribed for them.
Sorry not to reply individually.

Have now finished speaking to DC.
They have said they have spoken to everyone possible. They have been told company A and then company B are responsible for delivering their medication.
Both deny any knowledge.
IBD nurse has said their hands are tied.
I could weep (and have).

Have advised DC to wait two days and then speak to PALS.

I'm on biologics op and have been for 7 years. The initial prescription for each brand has always been a pain in the bum to sort as you have to wait for funding etc. Apparently a lot of biologics are made abroad and there is a huge delay too. I was sent 6 months supply in august/September last year .

I'm not sure who Is in charge of your prescriptions delivery but where I am it's very different to my standard chemist. Consultant/clinic submits the prescription , mine goes to a company called health care at home and then they are in charge of deliver it every 3-4 months. I would suggest getting your son to call the constant office , get the details of the clinic nurse and ask them who is in charge of fulfilling the prescriptions and has it been submitted yet.

Interesting fact- biologics are made from the ovarian cells of Syrian hamsters.