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Georgina

Age at interview: 50
Brief Outline: Georgina’s son Alessio, now 10, has complex health needs. Over the years Alessio has suffered from epileptic seizures, hypoglycemia, irritable hip syndrome and now Juvenile Idiopathic Arthritis. He is also on the autism spectrum. Georgina is very careful to minimize her son’s risk of getting ill as Alessio is immunocompromised and even a minor viral illness could prove dangerous.
Background: Georgina is 50 and lives with her son and husband. She works in housing and is also developing her own business. Ethnic background: Chinese.

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Georgina’s son Alessio, now 10, has complex health needs. Georgina experienced a very difficult pregnancy. She was ill with a viral illness nearly for the whole duration of her pregnancy and developed gestational diabetes. She says the viral illness surfaced during a difficult birth and she believes the virus was passed on to her son. Alessio was born with hypotonia (poor muscle tone) and experienced breathing difficulties and seizures soon after birth. He was diagnosed with epilepsy and later on with hypoglycemia and irritable hip syndrome. Around the age of 4 he was diagnosed on the autism spectrum with severe learning difficulties. Alessio‘s epilepsy has since been cleared but he now struggles with idiopathic arthritis. He also has a severe phobia of medical personnel and medical equipment and tests which can make it very difficult for him to be examined or treated.

Due to his medication Alessio is immunocompromised with colds and viruses having a significant impact on his health. Through trial and error, Georgina has learnt to manage her son’s illness episodes. Now that he is a bit older, she is more able to manage him at home but when he was little he often needed to be rushed to A&E in an ambulance. Nowadays, Alessio is seen quickly by the GP and also prioritized in the hospital and only seen by a senior clinician. Georgina says he’s prescribed antibiotics more readily due to his complex history but due to his allergies, he can only have two types of antibiotics. While she appreciates concerns around excessive antibiotic use, Georgina is very happy for Alessio to have them because he tends to develop a secondary bacterial illness easily. If he wasn’t given antibiotics promptly, Georgina fears his life might be at danger – so the decision to accept antibiotics has been an easy one. 

Alessio has the annual flu vaccine and has also been vaccinated against illness such as chicken pox. Georgina is very careful to minimize his risk of getting ill. She prepares all his food herself to avoid a risk of food poisoning. In school his desk is regularly cleaned with disinfectant and he is kept away from children with colds. Georgina has had to be very proactive in getting the health care for him that he now has and push for appropriate help and support. She describes how at times she’s had to go “begging” for the right support.

Juggling life around Alessio’s needs can be difficult, especially during acute illness episodes. Getting over a cold or a virus tends to take longer for him and can also trigger his arthritis. Georgina is Alessio’s primary carer and is usually the one to drop other commitments when he’s ill. Her family is in Hong Kong and across the UK. Her husband is from Italy so they have very little support networks available.
 

Alessio is immuno-compromised and he tends to develop secondary bacterial chest and ear infections when he has flu-like illness.

Alessio is immuno-compromised and he tends to develop secondary bacterial chest and ear infections when he has flu-like illness.

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And especially for prolonged period I mean if, if he’s just for example like he got better on Monday and if it hadn’t continued I would not have taken him to the doctor for the antibiotic. It came back again, if I don’t get treatment now it will get, it will get worse.

Yes.

Because it’s a prolonged period and it, I can hear that his breathing is difficult.

Yes.

Last night. And he’s also having a hoarse voice and he’s complaining about his ear ache. So it could be that he’s got ear, nose, throat infection as well. I think that’s possibly secondary. I think he had a viral infection initially…

Yes, yeah.

…and then it prolonged, it’s not been treated and now it’s gone to his ear, nose, throat because he suffers from hay fever. So he’s more inclined to get congested. He’s also got narrow tear ducts.

Yes.

So he cannot excrete, so it’s quite, it’s quite easy to get an infection around eyes.
 

Following advice from her GP, Georgina turns up the heating and strips her son of clothes to manage his high temperature.

Following advice from her GP, Georgina turns up the heating and strips her son of clothes to manage his high temperature.

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I think we have two GPs, one of the GP’s explained the logic of it. No-one ever did, he explained to me, it’s very, very good, okay you’ve got to put him in the room temperature and strip him down.

Raise the heating in the house okay, it’s normally happening in the winter time, raise the heat really high until completely, really warm if you and I just had a t-shirt, strip him down, allow him to cool naturally so body, okay. And that seemed to really work well okay. In the past we’ve followed this instructions and followed them and it cooled him down, open the window and he just shoot up the temperature, even sky high. So and we took him to hospital. So since then bit by bit we’ve learnt and he’s, we’ve managed to get him better.
 

Georgina gives Alessio a warm bath and she sometimes adds eucalyptus salts or a few drops of eucalyptus oil or lavender oil when he has flu-like illness.

Georgina gives Alessio a warm bath and she sometimes adds eucalyptus salts or a few drops of eucalyptus oil or lavender oil when he has flu-like illness.

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Have you tried any complementary approaches?

I do yes. I have. I used for example I use Olbas for him to help him to breathe easily for his clothes and his pyjamas. And also for baths I sometimes give him some Eucalyptus to help breathe easily as well and I used bath salt, relaxing as well to deal with all those things. And very soothing, I use Lavender, so it’s very soothing for him with a lovely bath, he likes it okay, he loves his lovely bath. And for aches and pains I do a massage sometimes, okay I use a massage oil. 
 

Alessio has complex needs. If Georgina telephones early in the morning, their GP will always give him an appointment that day and usually prescribes antibiotic treatment or she will go to the walk-in centre.

Alessio has complex needs. If Georgina telephones early in the morning, their GP will always give him an appointment that day and usually prescribes antibiotic treatment or she will go to the walk-in centre.

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How do you decide who to, whether to see somebody or to contact a GP or out of hours or go to the hospital?

For, in general I wouldn’t take him to casualty because it’s very stressful…

Yes and he’s,

…for autism as well.

Yeah.

So in the past we have, when he’s come, when a, I think when he was younger and we didn’t understand, I think a lot more difficult, complex now. 

Okay.

Now I’m more experienced now

Sure.

I can deal a lot more, better, and I have more information at my hand, I can call on who I need to call on…

Yeah

…and with the GP he gets prioritised anyway, during working, during the working hours they prioritise him.

Okay.

So they can see him on the day. If I ring in the morning he normally gets seen on that morning, it’s by appointment only but he gets to be seen.

Yeah.

And we get his antibiotic. And  for out of hours in general he always, every time I explain they are very cautious when they have a complex health needs child coming along, and they’ll, everyone I’ve seen they have always prescribed what I ask for okay. Because it’s only two antibiotic he can take anyway.

I think from experience I know what I need. If he get the treatment antibiotic there’s no need for him to go to hospital.

Okay.

Okay. And I don’t think casualty is for that anyway, okay. For, just for, for still something like this it’s, it’s not necessary and there are things, there’s walk, a walk in centre. There’s one open, they have doctor presiding, to go to walk-in centre. So I can get there, there’s no need for him to go to casualty.
 

When Alessio, who has complex needs was younger, Georgina would usually call an ambulance to take him to hospital if his medicine was not having any effect on his very high temperature.

When Alessio, who has complex needs was younger, Georgina would usually call an ambulance to take him to hospital if his medicine was not having any effect on his very high temperature.

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Is there anything that you could, or that you used to do when he was little?

I did when little, when he had a high temperature I actually called the ambulance.

‘Cos he was so high?

Yeah.

The temperature.

And they were quite, they were very happy with that because…

Sure.

…a child, he could, they said with his complex, at the time he was suffering from epilepsy, he was on medication for epilepsy as well…

Yes

…and he’d got hypoglycaemia.

Yes

So they all, always I think I always call the ambulance in.

Has that happened many times?

Quite a number of times. He’s a regular, they know him so well, everyone knows him now ‘cos, not now but he used to be when he was young. “Oh I see you again then.” [Laughter].

And what would happen when the ambulance would come and you know, you know let’s see he had a high temperature, would they treat him or would they always take him to the hospital?

Take him to hospital.

Always?

Yeah. And they’ve been, I think the ambulance are very good. They always took him to the hospital that I ask for. In the rule it’s always been the local hospital, and I, and they all agreed to me, with me say that “Oh [hospital name] is better because specialised.” And also all his consultants are there.

Yeah.

Okay and they say “I won’t take him anywhere, we go to [hospital name].”
 

Georgina works full time as a manager. When Alessio is ill, she takes annual leave or sometimes she can work from home.

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Georgina works full time as a manager. When Alessio is ill, she takes annual leave or sometimes she can work from home.

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Yeah my annual leave. So I’m always very careful how I use my annual leave.

Okay yes.

But also now I think let’s say he’s required a lot less compared to what he used to be when he was a baby. When he was younger.

Sure.

I’ve now been able now for example like I can actually; sometimes I can work from home when he’s not too bad. And when there is, I can, can still work, do my work on my computer and answer calls, especially when sometimes there’s some urgent things I must be available,

Sure.

Or my boss wouldn’t allow me to do that. So but when he’s, sometimes I just take, when he’s really ill I just take a day off to look after him.
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