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Paediatric Neurosciences - Our Work

Finn's SDR Journey

Finn's SDR Journey

During the pregnancy at around 28 weeks, Finn’s mum had, threatened preterm labour, which was stopped with medication, the pregnancy then progressed normally and Finn was born at 38 weeks an uncomplicated water birth, Finn was born with normal apgars and breastfed like a dream. 

At around 9 months, Finn was seen by his health visitor for his 9 month-1 year check, where is became apparent that he wasn’t meeting his physical mile stones, he had never pulled himself up, wasn’t cruising furniture and also had a dominant right hand. A referral was made to a children’s physiotherapist and Finn was seen a few weeks later, this coincided with the family relocating to Hampshire but thank to the initial physio’s making contact with local services in Hampshire, Finn was seen by a physio and consultant, where an official diagnosis of Cerebral Palsy (Bilateral Diplegia of the Lower limbs with some upper limb involvement) was made. This was a complete an utter shock to us as a family. 

With endless hospital, physiotherapy, OT appointments, Finn has come on leaps and bounds since his diagnosis. He has gone from not walking, to using a walking frame, to now at the age of 5 completely walking independently and attending mainstream school. He wears orthotic splints and uses his wheelchair out and about, as gets tired easily and falls over a lot. He also suffers with regular night cramps, which are heart-breaking, we tried medication but unfortunately for Finn he suffered a lot from the side effects. 

Last year we made the decision that we would consider SDR for Finn and we were referred to Bristol Children’s Hospital. At the beginning of this year (2019), we were given the exciting news that Finn fulfilled the NHS SDR criteria as he was GMFC level 2 and could have the surgery. Finn had his surgery on 09th August, we hope it will reduce his need for further orthopaedic surgery in the future, and will give him more independence and a better quality of life in the future, as well as reduce his pain. We know the 2 year rehabilitation is going to be hard, but Finn is one happy, determined little man and knows the hard work is going too totally be worth it.

The Start of Finn’s Journey  

On Friday 09th August Finn had his SDR surgery in Bristol, although Finn’s surgery has been long in the planning and the surgery all went well, nothing could prepare us for how tough the last 72 hours have been as parents, an absolute rollercoaster of emotions, we have had to constantly remind ourselves why we have done this. Day 3 is hopefully our turning point but where the hard works now begins, after 72 hours of lying completely flat, Finn was able to sit up for the first time, each day is now little baby steps closer to a better future for Finn. 

Day 5 following SDR, Finn’s first day stood up and our little superhero achieved this, as well as being able to kick a football. Another emotional but amazingly proud day for us as parents. Click on the below link to see Finn in action.

Day 5 Vblog

Day 10 Well done Finn, your a little superstar. Click on the below link to see how well Finn is doing.

Day 10 Vblog

Paediatric Critical Care - Our Work

TV&W PCC ODN - Paediatric Critical Care Minimum Data Set (PCCMDS)

The PCCMDS is a mandated, national dataset which captures Level 1, 2 and 3 patient activity using the national XB01Z-XB09Z HRGs.

The ODN has asked all Trusts in the region to collect this data on an ongoing basis for inpatients to inform and support our work with the national review for Paediatric Critical Care and Paediatric Surgery.

Frequently Asked Questions:

Q1: Which codes should we include in our reporting?

A1: Please include any XB HRG codes which come out of the grouper. NB. XB08Z relates to retrieval transport and should not appear in DGH data.

Q2: Should we only collect data on patients in recognised high care bed spaces?

A2: No, we want data to represent the true level of PCC activity in our region so data should be collected on any admitted patient irrespective of the level of bed they are in.

Q3: Should we include 30-60 minute drug therapies such as phenytoin or phenabarbatone as continuous infusions?

A3: No, a continuous infusion means non-stop and needs to be given for more than 4 hours to meet PCCMDS criteria.  Intermittent infusions such as phenytoin will not trigger PCCMDS criteria unless the patient also has a reduced level of consciousness (GCS).

Paediatric Critical Care - Our Work

Education & Training

The Paediatric Critical Care network prides itself on maintaining a focus on training and education for all staff in the network to support paediatric critical care work in our Trusts.  Where possible education will be free to attend.

All current courses available for paediatrics can be viewed on the Wessex PIER website.

In addition, keep your eyes peeled for specific ODN offerings such as the annual education day (May), and annual M&M (September).

If there is something you would like us to be focusing on, please get in touch and let us know.

Paediatric Critical Care - Our Work

TV&W PCC ODN Quality Dashboard

The idea behind the dashboard was to develop a simple set of metrics which could demonstrate outcomes of our services, and more importantly could be used to monitor trends in performance so Trusts can explore and understand variation in performance.

The metrics focus on quality data measures such as;

  • Unplanned PICU admissions,
  • Medication Errors reaching the patient,
  • Deaths,
  • Sepsis performance and,
  • Time Critical Transfers.

The dashboard was started in early 2017 and some of our Trusts have done great work in using it to raise the profile of paediatric services within their Trusts.

Paediatric Critical Care - Our Work

Paediatric Nursing Competencies - Level 1

The Nursing Competencies programme has been designed from the national Time to Move On document (RCPCH 2014) and offers a short course (2 days) for nurses wanting to refresh or develop their Level 1 Critical Care skills.  Funding by Health Education England, the course is free to attend and is available six times a year across Thames Valley & Wessex locations.

Alongside the study days, a competency document must be completed back at your place of work. For more information and to book your place visit PIER website.

Paediatric Neurosciences - Our Work

Delivering work up for Epilepsy Surgery closer to home

Delivering work up for Epilepsy Surgery closer to home

The team has been working with the Children’s Epilepsy Surgery Service (CESS) based at Bristol Children’s Hospital, and the epilepsy teams at Southampton and Oxford Children’s Hospitals. The project aims to ensure that children with complex epilepsy from the Wessex and Thames Valley regions who are being considered for epilepsy surgery are able to receive as much of their pre-surgical care and diagnostics at their home tertiary centre as possible. This means less travel for the families and improved consistency of care from the epilepsy teams that they already have a relationship with.

A ‘hub and spoke’ model has been developed with the regional centres to ensure that access to paediatric epilepsy clinical care, neuro-psychological and psychiatric assessment, MRI, Video EEG and other diagnostic requirements can be provided as close to home for the patients as is appropriate.

There is a set tariff for pre-surgical evaluation (PSE) for epilepsy surgery and we have negotiated a division of the tariff between the CESS centre and the tertiary neurosciences centres to support the teams delivering the care.

From 1st April 2018 all PSE for children from the Wessex region will be delivered at Southampton Children’s Hospital. A similar arrangement for children from the Thames Valley region is being developed at Oxford Children’s Hospital.

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Events Calendar

8
Event: TV PCC Clinical Forum
Networks: Paediatric Critical Care
Location: Seminar Room, Level 4, Women & Children's Centre, OUH
Date: 8th November 2018
Time: 09:00 - 11:00
Information: Find out more
12
Event: Wessex PCC Clinical Forum
Networks: Paediatric Critical Care
Location: Meeting Room 2, Oakley Road
Date: 12th November 2018
Time: 09:30 - 12:00
Information: Find out more
19
Event: TVW PCC ODN SORT, Governance & Board meeting
Networks: Paediatric Critical Care
Location: West Berkshire Community Hospital, Newbury, RG18 3AS
Date: 19th November 2018
Time: 09:00 - 15:30
Information: We will be holding these three meetings together on this date at the following times; SORT – 0900 – 1100 Governance Group – 1100 – 1300 ODN Board – 1330 – 1530   Find out more
27
Event: TVW PCC ODN Exercise Kite
Networks: Paediatric Critical Care
Location: TBC, Reading area
Date: 27th February 2019
Time: 08:30 - 17:00
Information: Exercise Kite is an all day exercise in conjunction with ambulance services and trauma networks testing provider responses over Days 1-3 of a major incident scenario.  Public Health England are sponsoring the day.  Each TV&W hospital Emergency Planning lead (EPRR) is co-ordinating MDT attendance from their Trust so please speak to your EPRR lead if […] Find out more
17
Event: TVW PCC ODN Education Day 2019
Networks: Paediatric Critical Care
Location: Guild Hall, Winchester
Date: 17th May 2019
Time: 08:30 - 17:00
Information: Save the Date for the 2019 Thames Valley & Wessex Education Day! More details to follow. Find out more
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