APCP Newsletter 20-7-20

Hello from APCP Scotland!

Hello from everyone on the Scottish Regional Committee,

This has been very challenging times for all our members, and the planning for future services as we venture through the recovery phases is proving to be just as testing!  Within our region this year, we had been putting all our energy into supporting the running of the annual ITPP course which was scheduled to run in Edinburgh earlier this month.  That was of course cancelled, and we are now looking forward to hosting it in 2021 instead. 

As with all other regions, we are all now embracing the use of digital technology to assist us in delivering our services as effectively and safely as we can.  As well as Attend Anywhere and Microsoft Teams for our direct service needs, we are getting to grips with many other digital platforms that are available.  We are all becoming aware of the role that video will play in assisting development of specific advice for home programmes, and to this end there has been a fantastic series of video’s developed by the NHS Lanarkshire Paediatric Physiotherapy service entitled ‘Treatment at Home’.  They are happy for us to share their work which can be viewed here.

Our delivery of CPD is changing and we hope to have feedback from potential speakers from across our region to enable us to develop several short webinars across various topics, including recent service developments and updates on conditions, assessments and therapy approaches.  Information will be posted on the APCP website as soon as possible.  

Our planned study day for November, ‘Scoliosis – Update on Management in Scotland’ has also been cancelled in the meantime, but we are negotiating with confirmed speakers to see if it will be possible to run the day as a series of linked webinars – again, keep your eyes on the website for details as they are confirmed!!
 

Audrey Ducker

APCP Member

APCP CPIP National Network Update... More Questions Than Answers

The CPIP national network continues to work behind the scenes to support clinicians in the setting up of the CPIP patient management system in their areas. Across the UK the CPIPS assessment tool is being used widely and all regions are striving to secure funding for the online system. The system is now live in several areas across the country thanks to the hard work of all the local clinicians! Areas who have the online system working are Nottinghamshire, Lincolnshire, Cambridgeshire, Sheffield, Oxford and Southampton with several more very close to going live.    

In Nottinghamshire we have now been live with CPIP for around 2 years. We have 348 children on the system. The local team have been working closely with the radiography team, they now complete the migration percentage on all of the x rays completed and send them to the physiotherapy team to enter onto the child’s CPIP record. This has worked really well and helps keep everyone informed of the results of these X rays. The community physiotherapists have worked extremely hard to complete these assessments and at our review meetings report that it has been useful to do the measurements with the child’s family present to agree joint goals of treatment.

With several areas across the country now live we feel it is important to keep the use of the system consistent across the trusts, with so many different trusts in the UK this is going to be a challenge. Mr Steve Cooke (Orthopaedic Consultant) has started a working group to monitor this with representatives from all of the areas using the database both from the physiotherapy team and orthopaedic teams. It is hoped that this group will meet along with staff from HIC Dundee and information governance advisors. They will review what data is being put into the system and support the development of this as CPIP is used more widely.  

Unfortunately the national CPIP meeting and study day has had to be postponed till next year. The 1st Cerebral Palsy Integrated Pathway UK Meeting will now be 18 June 2021.  The decision to postpone the meeting for a full year was based on the acknowledgement that we will all be very busy with clinical work for several months after the current crisis has passed. The committee would like to thank all colleagues who submitted abstracts for this meeting. We will repeat our call for abstracts early next year for new and/or resubmissions. I am sure we will all have much to discuss as we review our caseloads following the Covid -19 pandemic.

As changes start to happen following the initial response to the Covid-19 crisis the question arises -When to review our patients with cerebral Palsy?  This is a hot topic question and there are no answers yet. Reviewing our vulnerable client group, as we have identified with the NICE guidance and the CPIP Pathway, is extremely important to support early intervention and prevention of secondary problems. At what stage will it be safe to bring them into hospital or school environments? This is currently an unknown. At present the surgeons have not got access to their usual tools and if we were to see them the treatment would need to be different.

We know it is important to review these young people regularly by physiotherapists in the community but at what risk? The CPIP measurements need to be completed in a standardised way to be entered onto the patient management system. To do this we need to use equipment such as a double plinth. Some clinics in the community have this equipment but others are reliant on bringing these Children and young people into the hospital setting. X rays are only available in the hospital setting too. The way we previously did clinics with these children and their families will need to change to allow social distancing in waiting areas and allow clinicians to use appropriate equipment to protect themselves and the patient. We await advice from the government and our local healthcare trusts. The good thing about the CPIP process is that it supports the children only being brought into hospital settings for further review with the Orthopaedic Surgeons when really needed.  When clinics are restarted it will be enormously helpful to have a clear pathway to triage who needs to be seen first.  In most areas therapists also work closely with paediatricians so this may also help them to triage who really needs a face to face review when we return to the new normal.

Following Covid-19, I worry like a lot of my physiotherapy colleagues that these children will have changed significantly. Even with the best of intentions, some families will not have been able to have large pieces of equipment such as standing frames at home and will therefore have limited postural management options. The children have not been accessing school but also are also not attending sports clubs and swimming lessons at the present time. This is likely to have had an impact on the fitness of young people across the board but for people with additional needs the impact is likely to be much greater.  On top of this all of the children will have still continued to grow and will need the equipment they have been able to access, such as splints and wheelchairs, reviewing too. It is definitely going to be a challenging time for us as we are able to see our caseloads again and all while there is a continued worry about the risk of a second peak in numbers of people with the virus. So many questions about how to risk assess when will be the right time to do this. It is great to see that physiotherapists have been keeping in touch with patients using telephone and video calls to try and prevent issues developing and in areas where community teams previously did a lot of travelling, video calls maybe another tool they use in the future to support their client group.

 In the long term after Covid-19, it will be interesting to see how this period has affected our client group. The information recorded by the CPIP system will certainly be useful to review. Members of our national network are already considering how this could be done. Only after the storm and the review of data will we truly know the wider impact of this crisis.     

Sarah Dewhurst

CPIP-UK National Network Chair

Extended Scope Physiotherapist- Paediatric Orthopaedics, Sherwood Forrest Hospital NHS Trust

APCP Neonatal Committee

“The Constant by Our Side”—Mothers’ Experiences of Early Intervention Therapy Services for Infants With Emerging Signs of Complex Neurodevelopmental Difficulties

Deanna Gibbs, PhD; Phillip Harniess, MSc, MCSP; Siew-Lian Crossley, MSc

The APCP neonatal physiotherapy group used the Qualitative Critical Appraisal Skills Checklist to guide them to review this work. The CASP tools are easy and free to access so may be used by clinicians who do not have access to library resources.

Overview

This article aims to explore parents’ perceptions of EI therapy for infants with complex emerging neurodevelopmental difficulties. It explores the perspectives of parents (mothers), specifically of their experience of early intervention therapy in the neonatal unit, during transition to home and in the community.

The authors appropriately employ qualitative methodology to improve our understanding of the parental experience. This is in an important area of work in an area of clinical practise which is currently under evaluated and poorly understood. Six purposively sampled parents from a Level 3 neonatal unit (intensive care unit) in the UK were interviewed at different stages of their journey to gain detailed insights into their experiences. Thematic analysis was used to analyse the data.

Four key themes emerged from the parent experiences during their relationship with therapy providers in the neonatal unit and following discharge: (a) a vulnerable start—adjusting to the unexpected; (b) becoming a mother—becoming a family; (c) the therapy journey; and (d) a new reality.

Critique

In the introductory literature, the authors highlight the importance of Early Intervention for infants with emerging complex neurodevelopmental difficulties. They appropriately refer to the importance of promoting and support parental mental health and early positive parent-infants relationships (attachment and bonding). The evidence for this is well summarised leading to the research question.

Qualitative methodology is an appropriate approach to the research questions and the authors clearly justify this. Additionally, the topic guide for interview questions is provided to give the reader a broad idea of the focus of interviews. Ethical approval was appropriately obtained. Purposive sampling is appropriate method of sampling for this study. The authors wanted to explore early intervention experiences of the parents of a specific patient group which are highlighted broadly by an inclusion and exclusion criteria. It is clear that the second and third authors identified potential participants from hospital records but it is not clear who initially approached the families about study participation (study authors of clinical staff). Additionally, it is not documented how many parents were invited to participate or how many parents declined to participate. Due to the small number of participants, this would have been useful information to document – is it due to time constraints, was it difficult to recruit, were there only a small number of infants who fit the inclusion criteria, or were parents reluctant to participate?

There is no description of the range of the emerging neurodevelopmental difficulties that the participating infant and families were experiencing. The infants documented diagnosis (table 2) gives minimal insight into the clinical picture of the infant and it would have been valuable to have more clinical information about the emerging difficulties. In clinical practise, a diagnosis may not reflect an infant’s actual ability or parent’s perception of infant ability or reflect the parents’ experience. 

The interviews provided rich data to analyse which give a valuable contribution to increasing our understanding of parental experience of early intervention therapy for children with emerging complex neurodevelopmental difficulties. It is unclear in the paper which of the authors undertook the interviews but all 3 authors contributed to analysis and generation of themes which increases confidence in analysis and generation of themes. Additionally, the themes are well supported by relevant quotations from a variety of the interview transcripts. It is difficult to ascertain whether data saturation was achieved through the interviews and this has not been reflected in the paper. It is likely that further themes or further evidence to support the reported themes may have emerged through larger sample of included parents. A thematic map of themes was developed but this was not published with the paper – this would have been an interesting and valuable addition. Furthermore, a greater extent of reflexivity would have enabled the researchers to critically examine their own role and potential for bias.

The results of this paper are generalizable to parents of infants who received care in a level 3 (intensive care unit) where families have access to a multi-disciplinary allied health team (including physiotherapy, occupational therapy and speech and language therapy). The organisation of neonatal units in the UK is in three levels, so these experiences may not reflect the experiences of parents in level 2 or 1 units. Additionally, there is a lack of allied health professional input into neonatal units and many units do not have access to a dedicated multi-disciplinary team. It may be that parents of infants with emerging complex neurodevelopmental disabilities in these units will have a different experience and this will be worth investigating and comparing.

In conclusion, this is an insightful view into the experiences of early intervention for parents of infants with emerging neurodevelopmental difficulties who received care in a level 3 neonatal unit with support from allied health multi-disciplinary team. The rich data should be used to promote and guide further research questions which may be generalizable to a variety of clinical settings and infant clinical presentations.

Taking CPIP to Sri Lanka

Anna Jones is a NHS paediatric physiotherapist working in West Dorset. Working with children of all ages, she specialises in neurological disorders such as cerebral palsy. Earlier this year, she spent 4 weeks in Sri Lanka with her family, volunteering with PhysioNet, a charity that provides physiotherapy and mobility equipment, for the disabled, young and old, in developing countries. Below she reflects on how basic therapy and equipment can make such a functional difference for some children and their families. She also talks about introducing the Cerebral Palsy Integrated Pathway (CPIP) to the local therapists.

Sri Lanka has limited therapeutic equipment and specialist provision for children with disabilities. Local therapists have been working hard to change this and have teamed up with PhysioNet. Now in its 15^th year, PhysioNet has been helping to reduce the stigma around children with disability by teaching local therapist’s additional skills and how to make, use and maintain therapy equipment needed for 24-hour postural care. 

With equipment donated from the NHS, social service departments, local education authorities and the private sector throughout the UK, children who had never been able to stand or walk before were able to do so.

I was lucky enough to take a sabbatical from my job as a Paediatric Physiotherapist in West Dorset to volunteer for PhysioNet. As well as working with the charity, I was hoping to swop skills and to learn about the approaches the local therapists were taking in a low resource situation. I had also been asked to present the work I have been doing in the UK with x-ray hip surveillance following the Cerebral Palsy Integrated Pathway (CPIP).

On my first day, I headed to the National Centre for Children with Cerebral Palsy and other Developmental Disorders in the capital Colombo. The first of its kind in Sri Lanka, the centre provides free specialist schooling and therapy for more than 120 children.

Although children can have government physiotherapy, it is often limited and not all families can access it, especially those

in more rural areas with no transport. These specialist centres are now being developed all around the country with the hard work and dedication of the local therapists, led by Gopi Kitnasamy.  The centres are funded through the MJF Charitable Foundation and run in conjunction with the local Cerebral Palsy charity CPLanka.

It was hot and sweaty work at 33 degrees or more.  Unlike in the UK, parents can stay at the centre while their children are in school, giving them the opportunity to spend time together or volunteer.  This provided a fantastic support network.

During my visit, some of these parents, who had completed an Appropriate Paper Technology Course (APT), were making standing frames, seating, trays, wheelchair inserts and therapy benches from paper and cardboard for the children to use in school and at home.

During my final week, my family and I headed to the East Coast to a newly opened centre in Batticaloa. Here I saw first-hand how a simple piece of equipment otherwise destined for landfill in this country could transform a child's life.
Two sisters presented with an undiagnosed ataxia.  They were fully dependent on their mother to help them stand and walk and move at home or in school.  In order to gain some stability when sitting, the younger sister, eight, had to prop her trunk and arms against the table.  This meant her arms were never free to play or do schoolwork. The simple provision of a Kaye (posterior) walker for each of the girls, and a supportive chair for the younger sister meant that their lives were transformed.  The younger girl was able to sit and play independently for the first time. Her older sister, 15, was so pleased to be able to take herself to the toilet independently. The smile on their mother's face, and their joy at their newfound freedom, will always be in my memory. It is easy to forget how such simple equipment can be life changing.

Another boy, five, who was presenting with spastic quadriplegia GMFCS level 5, would shout and cry unless he was in his mother's arms. This was impacting on his ability to be in school and engage in any activities, but it was also affecting the other children in the classroom.  His mother was exhausted and unable to earn a living or do any simple activities for herself.  A class chair was provided for him and, after a few days of shouting and getting used to it, he was able to sit comfortably and happily and play with toys on his tray.  It is hoped that a similar ATP chair can be made for him for home and that over time he will become more settled in his school environment, allowing his mother to return to work.

Another boy presented with hypotonia of unknown cause. We were able to seat him in a postural chair and in a supine standing frame for the first time. He was exceptionally floppy and unable to keep his head upright without support, affecting his ability to look at his surroundings and make social contact.  The equipment allowed him to be at his mother's eye level. He beamed when she sang to him face to face for the first time. His Mum had also been struggling to position him comfortably at night and this led to a discussion around sleep systems. I discovered that most children in the school co-slept with their parents/siblings thus making equipment difficult to fit on their bed. Sleep systems were not available. Due to his low tone, his legs frogged and his hips were at risk, making 24 hour postural management a priority. Mum had found that pillows alone were not enough to help control his legs when in bed, so she had come up with the simple solution of putting both his legs into a wide trouser leg. This seemed to work; he was more comfortable in bed, and he was able to sleep.

The number of children presenting with athetoid cerebral palsy appeared far higher than in the UK.  There were not many children at the centre with a history of prematurity but the local therapists commented that as medical care is improving and NICU specialist centres are now opening, they are starting to see more babies surviving but subsequently presenting with cerebral palsy. 

The local therapists were trying to review how they manage children with hip dislocations associated with cerebral palsy due

to the high rates of hip problems. I was invited to the local hospital and spent the afternoon with the radiology department where I presented the work we have been doing in the UK with x-ray hip surveillance following the Cerebral Palsy Integrated Pathway (CPIP).  I was able to run through the protocol for positioning and practically demonstrate techniques to make positioning children with abnormal tone easier when on an x-ray bed. Following this the local therapists were hoping to start further screening for all their children in the centre.

Respiratory aspiration was also a massive problem, often leading to pneumonia. One acutely unwell 10-year-old was brought into the centre. With a respiratory rate of 60, this was the poorliest boy I had seen outside a hospital. I was scared for him and his family. With a diagnosis of quadriplegic athetoid cerebral palsy (GMFCS level IV), and a history of respiratory aspiration, I feared he would go into respiratory arrest. There was no monitoring equipment available at the centre where I had been volunteering and his parents were refusing to take him to hospital due to a previous bad experience and the sheer cost to get him there. But, with basic positioning, we managed to get his respiratory rate to reduce and his work of breathing settled. His parents were eventually persuaded to take him to the local hospital where it was confirmed that he had a right sided pneumonia. Thankfully, he survived.

Local therapists reported this is a common occurrence and children frequently present very late to hospital when acutely unwell in Sri Lanka. Sadly, it tends to be the most common cause of death in children they see. This is partly due to families often trying Aruvedic treatments first before seeking western medical advice, in addition to being unable to afford the cost of treatments, and fear.

Training for parents and other therapists on how to reduce aspiration risk for their child is in place by the local speech therapists but this is not always followed through.  There is a reluctance to thicken fluids and the thickener is expensive and not readily available. Therapists were teaching parents to use cornflour to thicken fluids as a cheaper alternative - it did not taste too bad with a dash of fresh fruit juice! It is unusual to be given a gastrostomy in Sri Lanka: it is difficult to manage the line and feeds and to keep things sterile.  If it is pulled out, there can often be a long journey to hospital by which time the gastro cannot be re-sited.  Some parents are trained to put a gastro back in place, but the cost of having an in-date spare tubing set at home is often too much for families.  As a result, it was rare for parents to have this skill.

Ultimately, this trip challenged me daily to be more adaptive and creative with the equipment and resources available. I hope it has made me a more resilient and reflective therapist. I certainly have some new skills to try now I am home. I urge everyone, at some point in their careers, to step out of their comfort zones and challenge themselves to try a trip like this. It has been truly inspiring. I was amazed by how simple fixes to equipment, no longer in use in the UK, could make it satisfactorily safe and functional. If any therapists or schools have equipment they no longer use or that is damaged, then please contact PhysioNet. They are always on the lookout for therapeutic chairs, floor sitters, standing frames, walkers, walking aids such as crutches and zimmer frames, beds, toileting frames, orthotics such as gaiters or boots plus any toys.  PhysioNet can arrange collection for free if you have more than 20 items. Please see their website www.physionet.org.uk for more information. 

Thank you for taking time to read this and good luck with any new adventures you choose!

Anna Jones