Joined-up disability services
I have a lifelong disability. When I was a child, there was a clinic at the hospital for every child with that disability, and they were able to meet with all of their specialists over the course of the day. I still engage with several specialists, but now that I've aged out of the children's hospital system, it's much harder to resolve things. As I age my health gets 'weirder' and it would be so useful to have all the specialists on the same page to suggest whether something might be related to my disability.
I would also like to see one directory where people with disabilities can look up the type of service they need and find a provider or process easily - for example, where do I go if my equipment needs to be upgraded or repaired? What follow-up/treatment needs to be initiated by my GP, and where can I self-refer?
Why the contribution is important
UNCRPD Article 25: Persons with disabilities have the right to the highest attainable standard of health without discrimination on the basis of disability. They are to receive the same range, quality and standard of free or affordable health services as provided other persons, receive those health services needed because of their disabilities, and not to be discriminated against in the provision of health insurance.
UNCRPD Article 26: To enable persons with disabilities to attain maximum independence and ability, countries are to provide comprehensive habilitation and rehabilitation services in the areas of health, employment and education.
People can't attain the highest possible standard of health, receive appropriate and high-quality health care or be fully independent if they are fed up with trying to navigate a complex system.
by Rebekah on March 03, 2023 at 08:43AM
Posted by AceTimelord March 11, 2023 at 03:04
I have multiple disabilities, some common, some rare, it sure doesn't help in care of one if they have never even heard of my other disabilities, and have no disability awareness. I have literally nearly been denied crutches because the doctor didn't think a blind person could use them so nearly sent me home completely unable to walk. And that's with a common disability. The care for my complicated disability is so fractured it is rediculous.
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Posted by jennynoble March 14, 2023 at 10:15
The Drs they see are never on the same page they don't talk to one another and as a parent each time we see a new service we have to go right back to the beginning and explain their rare condition. Referrals within the health system are often declined with the reasons for decline being too rare too complex, we don't know how we can help. The expertise of the parents are ignored.
There needs to be a rare disease policy set in place so that there are clear guidelines on how people with disabilities should be treated within the health system.
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Posted by Bware March 25, 2023 at 08:33
Has huge patient, whanau and system benefits plus financial savings.
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Posted by Annemarie April 08, 2023 at 00:24
My son lives with a neurotypical flatmate, in a flat we own, with support workers coming in 5 times a week (but not on weekends because they don't do weekends!). Although he is non-verbal he can communicate in written form very well (taught himself to read aged 3), however he sometimes doesn't want to communicate.
At the beginning of March one of his support workers called me and asked me if I could check out his toes as they didn't look very good. I rocked down to his place and oh.my.god... his toes had horrible ingrowing toenails and obvious very advanced infection (I'm a health worker, I was surprised he wasn't septic)... turns out he'd been living with this and hiding it from all of us for around 6 months. Can you imagine how much pain he was in? (Note this was the 2nd of March)
Being mindful of not overwhelming ED I made an emergency appointment for him to see a GP at his local practice. He was seen very quickly and by a junior doctor who referred to a senior doctor who advised he needed to have his toenails removed; and offered to do it then and there under a local anaesthetic. My son is a needle phobic and tactile defensive and there was no way that was going to happen. So the Plan B was to prescribe antibiotics and an adjutant to help them work, and refer to the hospital to have them removed under general anaesthetic. So far so good. (that was visit number 1).
3 days later, the worst toe was looking no better, and the best toe was starting to look worse, I decided that perhaps the best place to get the attention he needed would be ED after all, and so I rocked up after I had finished my shift at work at the same hospital. He was seen and triaged, as non urgent (understandably, they were critically understaffed, we were happy to wait). After an 8 hour wait the lovely nurse came and saw me and said that they'd just had 4 people arrive into resus, and that they wouldn't get to us for a very long time, and to go home, get some sleep (it was now nearly midnight) and come back at 8am the next day (visit number 2).
Next day we arrived back at the now calm ED, and were assigned a lovely Nurse Practitioner who was a great advocate and by lunchtime my son was in the OT having his toenails removed under GA. This required some negotiation with the anaesthetist because my son requested very firmly that they give him gas to go to sleep and then put a cannula in, not the usual process but the anaesthetist accommodated this request without too many concerns. While he was having his operation we took the opportunity to take lots of blood tests as we don't get the chance very often. We were home the same day, with a referral to district nursing for dressing changes. (visit number 3).
The next day, my son texted to say his dressing had come off and the nurse wasn't coming until the next day, I managed to redress his toe, and it was dressed the next day by the district nurse. The following day the dressing came off (I know toes are tricky) so I redressed it, however I was dismayed to find that neither of his toes were showing much sign of improvement and so I made an appointment to take him back to his GP as his first prescription was now close to running out. His GP removed the dressing, agreed it was still in need of antibiotics so gave a further prescription for the same antibiotics and got his nurse to redo the dressings (total cost of appointment $44.50). GP instructed need for daily dressings with an antibiotic ointment added, so I went to the pharmacy and purchased dressings worth $54.93 (cutecerin, gauze, and tape are not cheap) and paid a further $15 for the prescription. (visit number 4).
Later that week we had a follow up appointment at the hospital, he was seen by a registrar and then the surgeon who did the operation, they both told me to keep on with the antibiotics as prescribed by his GP (visit number 5).
Following on from this we received a phonecall from his GP requesting that we make an appointment to come in to discuss blood test results. So an appointment was made for the following week. The GP reviewed the toes again, and issued a further prescription, I finally asked if any swabs of the infection had been taken, given that we were now on the third prescription of the same antibiotics. I was gobsmacked to discover that at no time in any of the previous contacts (now number 6) had anyone taken a swab of an evidently advanced infection, the GP actually balked a little and stated "it's almost always staph", but eventually took the swab, and issued the prescription. As a health practioner myself I would never prescribe an antibiotic without taking a sample first, especially an obviously advanced infection in someone who has communication and other issues affecting them. During this visit my son was also told his blood tests showed he now had "pre-diabetes", would need to be on Metformin and would need to eat more vegetables. As a health practitioner I consider that pretty inadequate advice, there was a one page leaflet on the healthy eating pyramid shared, but nothing else. (My son reads at age appropriate level.)
On returning home I realised my son (and myself) were going to need extra support to manage his pre-diabetes, so I made a repeat appointment to see the GP again the following week and requested a referral to a dietician. The GP went to pains to tell me he just needed to eat more vegetables and less carbs and more eggs. My difficulty is that my son has severe food aversions, carbs like pasta and potatoes are an important part of his diet, he is also on a benefit and therefore a very tight budget, as we all know eggs and veges are not cheap options right now. I work with gestational diabetes so have a fair idea of what is required, but we will still need some support with this. I was reluctantly referred to a private dietician. (Which will cost him $20/visit).
As I work in the system I was aware of the existence of diabetes nurses at the hospital, so I took it upon myself to phone them the next day, and she kindly took the time to discuss the situation and offered some other options, such as a health coach at the GP's practice, and a green prescription to allow gym visits.
The next day I finished work after a night shift and picked up his latest prescription, another $10 thank you, and dropped it off to him. When I woke after a nap there was a message on my phone stating that he had grown a resistant antibiotic on the swab and needed a different antibiotic, a prescription had been emailed to the pharmacy. I duly filled this, at a cost of another $10 and he has commenced on this, and finally, A FULL MONTH after this all started we are starting to finally see some healing in his poor sore toes.
Points that need to be learned from this long and sorry tale.
1. When dealing with people with disabilities, do "the most" not the least.
2. Be aware that budgets are tight, our son simply cannot afford to have to repeat and repeat prescriptions that were wrong to start with. His parents have funded all this (can't afford it either) but if we weren't around, the prescriptions would have not been filled and our son would be dead or have become septic and needed hospital admission.
3. Listen to the whanau we know our people best.
4. The systems need to be joined up better, referrals need to happen without it having to be like pulling teeth.
5. There needs to be better access to hospital for non-urgent but complex situations, having to wait to see a specialist to get the operation needed put my son at increased risk.
6. People with disabilities do not deserve to suffer, because people won't take the effort to work with their needs.
7. You cannot put this burden onto whanau, what would happen if we were elderly and unable to change dressings, provide funding, keep taking him back, what would happen if he didn't have parents? I live in fear for his future when we aren't around anymore. Conversely there are some whanau who want to provide this support and they need to be aided to do so, but not at their cost.
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