It has taken us literally years to get this far, we have been through a number of different departments and medical teams at the hospital in order to find the practitioners who are the perfect fit for our girls and we certainly couldn’t have done it without the help from CAMHS and in particular our family liaison worker there who has been phenomenal.
Last week was quite simply pants because I had to spend most of the week in bed with flu and a raging fever feeling like a wrung out dishcloth.
Thankfully, this week the fever has left me but just so I don’t feel too lonely it made sure a cold and husky throat remained to keep me company (how kind!). At the start of this week The Dave and girls couldn’t help laughing at me, as my voice kept disappearing and coming back with the odd squeak, much to my annoyance (as a control freak not having the use of my voice with which to bark out orders to the rest was mightily inconvenient and a great verbal holiday for the rest of the family). The squeak then developed into a new deeply unpleasant man voice, all be it one that sounded as if it had smoked heavily all it’s life. However, I am pleased to say that today I have a voice – a little wobbly and husky but still a usable voice which is also no longer a chesty manly one too – thankfully.
This week has not only seen the start of a recovery from flu but also some real plans for the girls healthcare.
On Monday we went with my eldest for her review with the psychiatrist, where we discussed her urgent need one to one therapy whilst waiting for the specialist therapist to become available (long 6 month waiting list time) and so this is now being organised via CAMHS asap to hold her in the interim (although there will also be an inevitable waiting time) and thankfully the change of medication should soon start to show some effectiveness over the next few weeks, as it build up in her system. We had some very interesting discussions and the upshot was that we feel that we will also benefit from revisiting family therapy – not the usual format (as we had in the past) but with our lovely liaison worker (guided by the psych), to make the atmosphere less intimidating no two way screen or listening support workers either and to use modelling clay, paints etc during the sessions to keep it informal and light whilst talking about the more difficult issues. Starting it all in a fortnight – so hopefully that we will all benefit positively from this.
On Wednesday morning we had a massive team meeting to review and plan future care for both the youngest with regards to their mental health and ME issues. It was led and chaired by our CAMHS liaison worker and supported by our pscyh and other therapist from CAMHS. Also involved were the Medical school team, and private Paediatric Consultant on speaker phone – with minutes being sent to the OT (who we had yet to meet) and our NHS Paediatric Consultant for middle daughter (who weren’t able to make it due to work commitments).
Anyway – this meeting was the BEST we have had EVER – and that’s something as we have been through years of meetings, reviews and assessments and never experienced anything as supportive and positive as this.
At the beginning The Dave read out the letters from the girls stating what they felt they needed and how they were both physically and mentally right now. I hasten to add both girls were invited but were not well enough to attend on the day.
We then approached each daughters care plan individually, discussing each health care providers vision of care – where we were now and how it could be made more holistic with cooperation from all the other elements involved. Medical school stated they had an obligation to teach our middle daughter but had barely seen her due to ill health – so the psych said she would formally write a letter stating she was not fit for education of any kind and that would resolve that issue. Our plan for the middle daughter was to work with the specialist OT to help her regain some strength and physical fitness and utilise her passion for art and photography as activities to use when pacing (instead of school work) and in conjunction with CAMHS support to build her up very slowly and gently. Her therapist agrees that CBT would help with her anxiety issues and so the psych is pushing that referral through and in the meantime is going to spend more time with her to review her medications (which her Consultant feels may also need increasing) and get her current therapist to work alongside family therapy and the psych appt’s until she is handed gently over in a slow transition to CBT as she gains some strength. Our lovely private Consultant will also now slowly handover to our NHS Consultant who now has taken our daughter on (instead of his registrars who kept changing every appointment) – so that we will be working with a small team and always seeing the same people for improved continuity and communication.
For our youngest daughter it was mentioned that she was under a different Consultant and only saw his registrars, who again were always changing creating lack of continuity and progress. So our psych will be in touch with the hospital on our behalf and switch her across to see the same Consultant as her sister (and NOT his registrars) – as sibling usually go under the same doctor and will help minimise the different people involved and improve quality of care. She is also being referred to the same specialist OT as her sister for rehabilitation care and her CBT referral being chased up (as we are in the position of having been accepted but not allocated a therapist yet). Her schooling was also discussed and agreed to slowly increase her time at home with the home tutor, then move her to the hospital school room, still with one to one with her tutor from home and then build up her time and stamina there until she can tolerate 8 hours of schooling a week – when we reach that point it will then be a case of transitioning into mainstream school for her 4 hours of English and 4 hours of Maths lessons a week alongside her peer group and spend a few of the break times there too for socialisation. This is obviously going to be a slow journey and will take months to progress – but we are being supported with this by the doctors, therapists and OT and so hopefully we can monitor her ME and try and prevent pushing too hard too fast and any major relapses (which have happened in the past and been so severe all schooling had to be halted).
The next meeting has been made for June with all the same parties being invited, also the NHS Consultant and OT hopefully being able to join us for that one too.
Then – on the same Wednesday but in the afternoon we met the OT (with middle daughter) who just was so kind, understanding, supportive and “got it” – such a massive relief. She also said she would look out for youngest daughters referral and would definitely take her on and it should only be a matter of weeks before she would be able to see her too – so not too long to wait. So middle daughter has a few charts to fill in (with my help) to get baseline abilities and has also agreed to go to the OT group once a week for an hour from 11am to midday on Tuesdays to do crafty activities with other girls aged between 14 & 19 years old – so a great age mix too. Her pacing activity for this week is just to get up and dressed every day – nothing more, just that. We have committed to attending the group and were told if she is feeling really sick just to take her in in her wheelchair and they would care for her – she wouldn’t have to do any crafting but to be with them so they can see and assess her and then have the knowledge to then address her issues when on bad days.
Today though – is our biggest success (as she had been suffering days with constipation just when we needed a small poop!) – we managed to get a stool sample for middle daughter too – so we can send it off for testing to see if she has Crohns or Ulcerative Colitis. Now we have to wait for 2-3 weeks to get the results as it gets sent away for testing.
ALSO – today my eldest daughter had a fabulous idea – she had bought a blank canvas and some childrens water based paints and wanted to make a piece of dog art! So, as it was a lovely day outside today and eldest had the afternoon off College and we have no appointments to attend to – we went for it. The youngest two were very tired and aching but managed to gather up some energy to participate (the warmth of the sun did help a little) and they proceeded to fill paper plates with paint, the dogs were then fed treats in return for having paws put in the paint and asked to walk on the canvas, it was great but messy fun! At the end we all put our hand prints in each corner and finger painted our names onto the canvas too. Then it was time for dog baths and for me to hose down the patio and decking! Once the canvas is dry we will seal it and then it will be ready to hang.
Needless to say the youngest two are now pooped and fast asleep – most likely they will also get pem over the next day or so – but we have an album full of photos and a colourful canvas to remind us of the fun we had.
I won’t share any more with you about our dog art day though as I my eldest has written a blog about it with more photos and so please read more about it (and see the adorable photos) here.
For the first time in a very long time, this week I feel that we have hope.
I am incredibly grateful to the team at CAMHS for streamlining our medical care team on our behalf and contacting all the necessary parties to ensure that the channels of communication are kept open and that everyone is informed and kept up to date with all treatments and care plans that are being made.
So whatever your circumstances are right now, however hard life is – please don’t ever give up hope.