"Multiple issues I raised were never addressed"

My daughter was required to attend Raigmore weekly for blood tests. She was a few weeks old when this began. We spent 5 weeks in hospital, got home and got one full day at home before having to travel back down to Raigmore. On public transport the night before with a new born baby with the expense of staying in a hotel because we were not informed we were to get Kyle Court until after we booked it. 

I emailed her consultant with many reasons why the 200 mile round trip weekly was not doable. Nothing was done, the only aspect they took into consideration was the financial. They booked our train tickets for us but only one parent was allowed, it was changed to both of us on account of the sheer amount of stuff necessary for a new born overnight being impossible for one person to manage on a train. 

I remember the first week we got our travel form I was informed that most people drive. I was 5 weeks postpartum after a caesarean, I was not medically cleared to drive, we had no choice. 

The week the tickets were set up to be bought the following week we had claimed our tickets back from the cash office. An email was sent questioning us claiming tickets back while also getting tickets booked for us. It felt like we were being accused of claiming money we were not entitled too. 

The accommodation provided in Kyle Court was a joke. Nothing for the actual patient, they gave  a baby a regular sized bed. The following week we were given a room someone was able to reach into from outside through an open window. Also only had a sink in it, no bathroom, which didn't even have soap. So even to wash our hands after changing a nappy or before making a feed we had to leave the room. 

I emailed but received no response until I went through my daughter’s consultant's secretary. 

After this I was cleared to drive and we chose to leave at 5/6am and drive instead of dealing with another night in Kyle Court. I feel sorry for anyone staying there longer term, we didn't feel the facilities were up to standard. 

The blood tests were to monitor the levels of medication my baby was on. She was on this for 3 months but not once was a repeat set up. We had to constantly ask for a prescription, then would go to the pharmacy only for them to not have in stock. One week a doctor said they would issue a repeat through our GP and gave us an outpatient prescription only for our local pharmacy to tell us due to the medication only hospital pharmacies could dispense it. 

Thankfully we got moved off this medication but not before a wasted trip where they couldn't even take bloods.

I asked about doing this locally but nothing was ever set up, even on a trial basis despite all the difficulties in us travelling with a new born. We were never given an exact reason. When I complained about this and asked for reasons all I got back from her consultant in the official complaint response was that they had already explained it to us. 

While on this medication we were injecting our baby ourselves and inserting sub cut cannulas. Our Health Visitor asked for Community Paediatric input but the referral was never passed on. I have seen the email trail to back it. I mentioned it in my complaint but received no response so it clearly wasn't looked into. 

One morning, we got a call from my baby's consultant from Glasgow, they wanted to see us in Raigmore. We were meant to have been told but weren't. When we said we couldn't make the drive we were told we'd need to go to Glasgow but couldn't tell us when. 

I asked the consultants secretary about oxygen monitoring for my baby as she is cardiac baby. They said they would pass it on. I never heard anything back. 

I asked again and brought up a clinic we had a letter stating we were to be seen at (we weren't but had been in Glasgow for a scan that same week which I asked if that was a replacement for the clinic.) The consultant woke up my partner who works nights to tell him the scan results would be two weeks - which was not what I asked.

I finally got answers to my questions after receiving email records.  The secretary was in contact with Glasgow saying that they wanted full information because I was not happy with how things have been communicated. They claimed they had no idea what letter I was talking about while also saying the clinic had obviously passed. I also found out they knew the full extent of my baby's condition which was not passed onto us.

Glasgow set up oxygen monitoring locally for us which took two weeks to set up in Caithness General. Yet at an appointment there a nurse told me if I had walked into a GP and said I was worried they could check her then and there, same with A&E. I emailed the manager of CG at the time but received no response. Her monitoring was moved to Dunbar after one week I had to park at the train station and walk in the rain with a baby due to the lack of parking which made us late despite arriving 10 minutes early in the car park.

I submitted a complaint November 23, a full response was finally received in January 24. Multiple issues I raised were never addressed and blame simply passed to others. 

There is even more to add but I've hit the word count and can't summarise it well enough.