As much as possible you and your family need to think about future possibilities.  How will you handle a major pain flareup? It can be a shock when people and resources that have been a support base are no longer available.

You might also want to think about information security.  Be aware that files might not be kept at PMH for as long as you think.  If there is important information on PMH records make sure you request a copy through official channels.

Your adult child will then be able to hand on informaton to their new adult specialists about treatments they may have had.

Discuss transition plans with your teenager’s specialist team.  Follow up conversations and make sure you know what is going to happen and when.

What you are trying to avoid is a situation where your adult child needs assistance and the care team you are used to is no longer available.  You don’t want to be trying to access a new resource in the middle of a crisis.

Here is the list of dedicated Pain units in Perth as of March 2012.  If any of this information has changed please let me know so I can update this post for other parents.

Bethesda Hospital
Classification: Tier 1 Multidisciplinary Pain Clinic MPC
Facility Details: Achieve Pain Control Group
Bethesda Hospital
25 Queenslea Drive
Claremont WA 6010
Telephone: 08 4340 6380
Email: achieve@iinet.net.au
Director: Dr John Salmon
Hospital Affiliation: Bethesda Hospital
Services: Outpatients 1:1 consultation
Outpatient Multi-disciplinary
Inpatient consultant service
Pain Management programme
Private Pain Consultation Service

Fremantle Hospital
Classification: Tier 2 Pain Management Service PMS
Facility: Fremantle Hospital Pain Clinic
Alma Street
Fremantle WA 6160
Telephone: 08 9431 2427
Medical Director: Dr Mark Platell
Hospital Affiliation: Fremantle Hospital
Service: Outpatients 1:1 Consultation
Outpatient Multi-disciplinary
Inpatient consultation services
Pain Management programme

Royal Perth Hospital
Classification: Tier 1 Multidisciplinary Pain Clinic MPC
Facility: Royal Perth Hospital
Shenton Park Campus
6 Selby Street
Pain Medicine Centre, Level 2, Q Block
Shenton Park WA 6008
Telephone: 08 9382 7574
Medical Director: Professor S A Schay
Hospital Affiliation: Royal Perth Hospital
Services: Outpatient Multi-disciplinary
Inpatient consultative services
Outpatient 1:1 Consultation
Pain Management Programme.

Sir Charles Gairdner Hospital
Classification: Tier 1 Multidisciplinary Pain Clinic MPC
Facility: Western Australian Pain Management Centre
Sir Charles Gairdner Hospital
Hospital Avenue
Nedlands WA 6909
Telephone: 08 9346 3263
Medical Director: Dr Roger Gouke
Hospital Affiliation: Sir Charles Gairdiner Hospital
Services: Outpatients 1:1 Consultation
Outpatient Multi-disciplinary
Inpatient Consultative Services
Pain Management Programme
Private Pain Consultation Service

I just found this on the ABC News website. I will copy the quote because I am not sure how long a direct link will work for.

Children to get greater say in hospital care

Children will soon have a greater say in the healthcare they receive in Australian hospitals. 

Australia’s major children’s hospitals have today recognised the charter of children’s rights in healthcare.The document states that children and adolescents should have access to information about their health in a form they can understand. Human Rights Commissioner, Catherine Branson, says the charter stresses decisions must be made in the best interest of the child.

“It’s actually quite challenging for many of us, the need to consult the child, to hear and respect the views of the child,” she said. ”It’s so easy to overlook the right of the child to be heard and go directly to the parent.”
ABC News Website, Wednesday November 10, 2010

My husband helped me to understand that our job was to help our my daughter make informed decisions. He was right in understanding that as she had little control over her medical condition it was critical that she was in charge of choices regarding treatments.

Respecting your child’s right to choose can be incredibly difficult and stressful at times. As a worried parent the temptation to take control can be powerful.

The benefit of implementing our practice of letting our daughter choose became clear after she attended her first arthritis camp.

She told us later a number of kids would pretend to take medicatons and later throw them away. She was genuinely bewildered about why this would be.

It proved to me that if kids feel treatments are forced on them by parents and medicos they will feel resentful and not comply whenever they can.

It also means that they are less likely to take responsibility for other factors that influence health outcomes like exercise and healthy diet.

So yes I think this is an important positive step. It also will be very challenging to implement within the hierarchy of hospital systems which are by their nature pretty disempowering.

But hey it is wonderful to see this baby step in the right direction.

Oh and by the way – helping our daughter make informed decisions, learning to respect her choices, supporting her growing ability to take responsiblity for her health – these are all works in progress. There are good days and messy days.

As a parent you aren’t going to get the balance right every time. The important thing is to keep chipping away at the process and be kind to yourself.

It is nice to take a cheerful rug for your bed.

Some times the rheumatology team will admit a child to hospital so that they can have access to several therapies. Seeing a child over several days also enables the team to get a better picture of how your child is managing.

Somehow it is always you who ends up having to carry everything back to the car so don’t be conned into taking half the bedroom. There is very little storage at the bedside.

There are only a couple of basics you really need to pack-

• Casual clothes – undies, track pants, t-shirts, jumper (some kids sleep in casual clothes too)
• Swimmers (for hydro)
• Toiletries bag- shampoo, soap, comb, deoderant, toothpaste, toothbrush
• PJs
• Thongs
• Any assignments or work from school.
• Plastic bags to bring home washing
• Written list of medications and dosages (these will be supplied by hospital during stay)

There are a few useful things you can add but they aren’t essential-

• Book/magazines
• Note book & pen
• Dressing gown
• Slippers

Morale boosters you might consider-

• Favourite fridge food – yoghurt, lean cuisine frozen meals, snack/comfort food – have these labelled and put in a paper bag to reduce the chances of theft.
• Favourite cheerful rug or quilt for bed
• Favourite pillow case
• Parent stash – favourite cup, tea bags/coffee and bikkies/fruitcake -
  hide in the back of the wardrobe cupboard for sustenance during visits.
• Favourite teddy

Luxuries that only a few kids have. These are usually only relevant for older teenagers who are able to look after them. The laptop and mobile phone help them to keep in touch with their friends.

• *Mobile phone or phone card
• *ipod and ear plugs
• Laptop
• (Cable needs to be checked and approved by PMH safety sticker- staff will advise)
• Laptop security lead (To lock laptop to bed rail)
  *These will need to stay with your teenager to avoid having them stolen.

Bed photo thanks to bennylin0724 at Flickr Creative Commons.

Work out a crisis plan with your doctor.

There is something in the universal law of rheumatology that says that flare ups occur late on a Friday or on the week-end.

You have a child climbing up the walls, your whole household is on edge and Monday seems too far away.

The official advice is “if you are worried – go to emergency”.

You know emergency means having to wait for hours depending on how busy the department is. It also means exposing your otherwise well child to other children with a cold, virus or flu.

If the staff do admit your child, and a bed is found, you may have another long wait until your child can go to the ward. Once on the ward not a lot can really happen until your child sees their specialist.

Even so, there are times when we have chosen to do it anyway. There are times when the pressure of managing gets too much. What you do need to remember is that going to emergency may not make things better and in some cases you might actually come away exhausted and feeling pretty horrible.

An emergency department is a place to deal with medical emergencies. If you are caring for a child with chronic issues you should try to avoid going there unless a doctor or liaison nurse tells you to go. These people are highly trained specialists in dealing with a medical emergency. They are not resourced to deal appropriately with a management crisis which is more the domain of the rheumatology team.

It is a good idea to discuss a crisis plan with your doctor. For example, if it is appropriate, they may give you a medication chart for normal days, one for worse days and one for a really bad/new flare up on the week-end type situations.

Have your Crisis Plan in writing somewhere you can find it. Have a medication cupboard stocked with what you will need. This will probably give you confidence to cope with a week-end flare up until you can consult with the rheumatology liaison nurse on Monday morning.

I sometimes worry that I could miss something else going wrong and not respond appropriately. In the past I have also used these strategies;

• I take my daughters temperature as a reality check.
• I have also called a 24 hour health advice line Health Direct at 1800 022 222 to go over my plan.

Having said all that, parental instinct is still the best guide – as the experts say “if you are worried – go to emergency”.  This applies when your kids are young.

No teenager, with experience of the routine, would choose to go to hospital on the week-end unless it is really necessary. These days we let our daughter make the call. If she needs to go to emergency she says so and we go.

We will probably just get sent home after a few hours – but that is not the point. It is a reality check for her and sometimes it is still necessary.

What do you do in these situations?

Crisis photo courtesy of Celine Nadeau at Flickr Creative Commons.

Having your own mug and some nice tea can be comforting.

Whether you are a constant bedside parent or a visit after work parent you can do several things that improve the hospital stay experience for you and your child.  I don’t always have the energy to do these things but I know they work.

Supplies
Leave you and your partners favoured coffee mug along with your favourite teabags or coffee in a bag in your childs cupboard. You might also bring a plastic container with your preferred biscuit or fruit cake, nuts etc.  Take time to make yourself a  good cuppa and sit back and enjoy it. Remind yourself to relax.

Learn and Use Other Patient Names
All the kids have their names on the wall beside their bed.  As you enter and leave the ward say hello and goodbye to the other kids by name.  ”Hi Michelle” ” “See you later Jo”.  I have found that this simple process helps the kids learn each others names and acts as a bit of an ice breaker on the ward.

Learn and Use Nurse Names
I use the staff names in front of my child.  If a nurse delivers a medication, I notice the name tag and say, “Thanks Kevin.”  It encourages your child to do the same.  Kids who are polite and appreciative are more likely to be chatted to by staff.  This also means your child is more likely to ask for assistance if they need it because they know who their nurse is.

Acknowledge Other Parents
It is easy to acknowledge other parents without being intrusive.  Most parents are very tense – don’t be put off – be friendly anyway.

• If you are making a tea, offer to make them one too.  Some people find it hard to leave their chid.
• When you have finished with a magazine or newspaper offer it to another parent.
• If you are off to the shop ask around and see if anyone wants supplies.
• Give a nod of acknowledgement as you come and go from the ward.

I have found the process of learning names and acknowledging other parents makes an important difference.  Somehow it makes it easier for other parents to comfort or assist your child when you aren’t there.  This might be a simple thing like opening the high security plastic in the little cereal boxes.  It might be something major like noticing your child is distressed and alerting staff.

Coffee mug photo courtesy of radiant guy at Flickr Creative Commons

Flying solo on Ward 17

In some circumstances I really did need to be there. I didn’t get much sleep but I was needed.

Once she turned thirteen she was admitted to Ward 17 where things are a little different.

As the ward is for teenagers, parents are not really encouraged to stay. This particularly applies during routine admissions.

At first it is very difficult to leave her there alone. We got late night tearful calls. I remember this as being a very stressful time for the whole family.

I was desperate to get a good nights sleep. At the same time I felt awful leaving her there alone. I’d often ring the ward and ask the nursing staff for reassurance. They were very understanding.

After a short while, our young teenager started to make friends with the other patients and join in their activities like Club Ado. It is a great feeling to see her independence and confidence develop.

There are a lot of benefits that come from mixing with other teenagers who have battles of their own. Sometimes my daughter has told me that she thinks other kids have a harder time than she does. I think there is considerable benefit in having this sort of perspective.

Staying by herself also means that our teenager learns to ask for and receive assistance from other people.

This is a helpful development during a time when she, like most teenagers, increasingly disregards most things we have to say.

Nursing staff and fellow patients can play an important positive role in helping her come to terms with managing her own health.

Once I got used to it, I did start to enjoy my daughter flying solo on Ward 17.

So if you are negotiating the transition to Ward 17 let me say – “If you are going through hell, keep going.” You will enjoy it when you get to the other side.

Photo courtesy of Lip Kee at Flickr Creative Commons