How participants were informed about changes to the dose of their medication

A common theme emerged around the timeliness that information gets to the patient’s GP from the hospital prescriber. Participants described being advised of a dose change in clinic and initiating the dose change for the next due dose. However, participants encountered difficulty if the letter to the GP containing the updated dose information had not arrived in time for a repeat supply of medication. The difficulties described included running out of medication earlier, the GP being unable to update the dose instructions without clear

communication from the prescriber, patients’ schools being unable to administer a new dose without it being specified on the pharmacy label attached to the medication and healthcare professional uncertainty when participants advised that they were administering a different dose to the last entry documented in the patient’s medical notes. Examples of parents experiences of their knowledge of dose changes not being accepted by healthcare professionals include the following:

“That can be a real pain because for instance the Buccolam because it was just a word of mouth thing, because she'd had a fit the 5 didn't work so I need to give 7.5. It was done over the phone it was done over the phone after I'd left the hospital because they couldn't get hold of the consultant, so I didn't have it on a discharge letter, so there was no proof, it was just me telling someone and when I phoned the prescriptions people at the doctors she said she can't give it you without an email or something from the hospital so then it was left for me to phone the hospital to say look they can't give it can you do an email well we're busy at the moment we'll try and get to do it later. And it's all work for me really.” Mother of Patient 9

116

prescribed via gastrostomy senna, Movicol®, paracetamol, carbamazepine, levetiracetam, omeprazole, buccal midazolam, inhaled oxygen, rectal phosphate and sodium citrate.

“It eventually goes to the GP. I had to basically do another prescription so I wrote on the repeat form that we get that he’ got to have 5mL three times a day. So, then I got a call a week later from the doctor [GP] saying ‘what do you mean he’s got to have 5mL because he’s only on 4?’. I said his cardiologist has changed it to 5mL so then they had to wait until they got confirmation and then we can get it factored in.” Mother of Patient 15 prescribed oral captopril and inhaled salbutamol.

“It's quite a while afterwards though you'll get a clinic letter that's obviously been dictated and things. Sometimes you'll get them sometimes you won't get them. And the issue that I have as well is because [Patient 21] is very much swings and roundabouts with her medication and with her bloods. With the desmopressin specifically because that changes most regularly if I've had an over-the-phone consultation, obviously with the consultant or the reg or

whoever else sometimes the notes won't be updated. Obviously, it will be in the notes

somewhere but they won't be updated so when I'm speaking to a consultant, when she came in today say by A&E they think oh is she still taking such and such and I'm like no, I've had a phone consultation and they're like ok. Then there's a query about am I actually giving the right times and the right amount and who was the one that gave the information so it's quite stressful in that sense because I feel like sort of not accused but I'm doing the wrong thing then.” Mother of Patient 21 prescribed oral desmopressin, levothyroxine, hydrocortisone and subcutaneous somatropin.

5.4.16 The impact of being cared for by more than one medical team on the co- ordination of appointments, prescribing of medication and ordering supplies

Most respondents did not experience any challenges being under more than one medical team. Having a single supply route was identified as key for ease of access to medication. Co-ordination through one prescriber of the main clinical team, collecting medication at hospital appointments and where all medication supplies come through the GP were identified as being the most effective supply routes for parents.

“She’s not having anything from respiratory. Renal, we just get it when she has an appointment and she goes for dialysis so whenever we go there and she needs any

medicines we just get it. For haematology, if she needs anything I can phone the consultants secretary and she gets it prescribed for her. So, we don’t have any problems” Mother of

117

Patient 13 prescribed oral omeprazole, penicillin V, aciclovir, atorvastatin, sevelamer, alfacalcidol and ondansetron. Injectable darbepoietin and ergocalciferol.

“To be honest, we usually get them at his appointment. Make sure he’s got enough to last so we’ll be here at the appointment anyway. There’ll be travel time but we would have done that anyway. But only because we’ve organised it that way.” Mother of Patient 8 prescribed oral mercaptopurine, methotrexate, dexamethasone, ondansetron, metoclopramide, lactulose, morphine, chlorphenamine and co-trimoxazole. Inhaled salbutamol.

One participant raised a concern about a lack of co-ordination from a clinical perspective. She was concerned that each team looking after her child prescribed very independently of each other. Hence, they were not aware of the consequences of medication choice for treatment prescribed by the other team.

“I knew a different person who was under a different consultant who literally coordinated everything. My drugs are never looked at from each side, you know, if she's given something in the heart department the respiratory don't check its counteracting with their [medication]. There's been one episode quite a while ago when the heart people where happy for her to be below 80% [O2 saturation]. But the respiratory team were very cross because that can cause lots and lots of lung...you know the pneumonias and so they organised oxygen and then it's like who organised the oxygen and then there’s a lot of toing and no coordination.” Mother of Patient 9 prescribed via gastrostomy senna, Movicol®, paracetamol, carbamazepine,

levetiracetam, omeprazole, buccal midazolam, inhaled oxygen, rectal phosphate and sodium citrate.

118

5.4.17 Experiences of the social burden experienced when a child/young person is