Development of Botulinum Toxin-A service in Fife, Scotland
The Botulinum Toxin-A (BTX-A) service in Fife provides management of focal spasticity for children with cerebral palsy (CP). Established in 2009, development of the service has allowed injections to be delivered through both general and topical anaesthetic. This has allowed flexibility and choice for the child/family, better meeting the individual needs of the child. Service user satisfaction is high and the development has demonstrated cost savings.
2009 78% GA
2011 21% GA
2012 onwards <25% GA
In 2008 a Clinical Specialist Physiotherapist (CSPT) was appointed to establish a more robust service in line with best practice guidance documents. The CSPT was able to coordinate and develop the service to more accurately meet the needs of this patient population.
The use of Botulinum Toxin-A (BoNT-A) for focal management of spasticity in children with Cerebral Palsy (CP) in NHS Fife was initiated by Dr Robert Humphreys, Paediatric Orthopaedic Physician in 2005. Best practice for this type of service includes specified pre and post assessment intervals and specific outcome measures (Heinen et al 2006, Katchburian et al 2008). Due to several reasons, this was not being achieved consistently.
BoNT-A has been used for focal management of spasticity since the early 1990s (Koman et al 1993).
BoNT-A has quickly become the treatment of choice for management of focal spasticity in children with cerebral palsy (CP) (Heinen et al 2006, Katchburian et al 2008).
Botulinum Toxin is made from the bacterium Clostridium Botulinum. When injected into muscles, it stops the nerve endings working to muscle fibres around the injection site. This causes a weakness in the muscle. This weakness usually can be noticed within a few days. The effect lasts until new nerve endings grow back, which typically takes around 3 to 4 months. This provides a window of opportunity to improve function, ease of care or prevent musculoskeletal complications that occur as a secondary consequence of CP.
BoNT-A is delivered through intra-muscular (IM) injection and often requires more than 1 injection to effectively target all the identified muscles. IM injections can be painful. Preventing distress to the child/family was paramount as was ensuring accuracy of injection. As a result, the majority of children required a general anaesthetic (GA) to receive the injections.
The BoNT-A injections were primarily delivered under GA on a monthly list with a capacity of 3 children. In the latter part of 2010, there were increasing problems with the designated monthly list held at Queen Margaret Hospital (QMH). The Children’s Ward had limited bed space and often the availability of beds determined if the list could go ahead. Even if there was some bed capacity, it was usually limited to 1-2 patients, not the previously agreed 3 children. The BoNT-A list was also the second list of the morning for the anaesthetist so delays often occurred which could be upsetting to child and family.
In response to the difficulties encountered with the monthly GA list, the CSPT suggested trying topical anaesthetic for a limited number of injections. BoNT-A injections with topical anaesthetic (Ametop cream) had occasionally been performed on an ad hoc basis, usually involving one child at a time. This was primarily done in the Paediatric Ambulatory Care Unit (PACU) at the Victoria Hospital. Whilst ideal in terms of being child/parent friendly, it was a busy unit with limited available clinic space.
Both clinicians (Paediatric Orthopaedic Physician and the CSPT) had also been on continuing education courses that improved their knowledge and competency for injection in a variety of ways – under ultra-sound guidance and with topical anaesthetic. Networking through special interest groups, such as the Motor Disorder Interest Group Scotland also brought to light the successful use of ethyl chloride spray in other areas.
Clinicians met with Fiona Burt, Charge Nurse, and explained the desire and needs for a monthly injection clinic to be held in PACU. The 4th Wednesday of each month was agreed for a six-month trial period. The injection clinic was allocated one bay with four beds. No additional nursing support was required other than ordering the Botox for the session. The child and family experience was enhanced as it was possible to have a Play Specialist to support each clinic The Play Specialists were already in place and accepted referrals for any child being seen at the children’s ward. During the six-month trial period 18 children had BoNT-A injections under topical anaesthetic with only one child not tolerating this approach.
Following review, it was agreed to continue the monthly clinic. In 2011 38 of the 48 injections were done without general anaesthetic, 34 in the PACU clinic with the remaining injections performed on an ad hoc basis. In 2009, 78% (n=35_) of the injections were done under general anaesthetic. The service has continued to evolve with the availability of Entonox in 2012 and Buccal Midazolam in 2013 further reducing the need for a general anaesthetic (GA).
The driving reason for the development of the topical injections clinic was to improve the service for children and their families when receiving BoNT-A injections.
This has been achieved with a significantly reduced number of children requiring a GA. In 2009, 78% (N= 35) children required a GA for their injections. In 2011, only 21% (n =10) required a GA. Since 2012, this number has remained under 25% of total annual injections requiring a GA.
A last patient satisfaction survey was performed at the end of 2011 with the aims to ensure that parents/carers were satisfied with their child receiving injections under topical anaesthetic, and to enable decisions to be made on what aspects of the clinic could be improved on.
Out of 26 parents (100%) 15 responded (58%).12 out of 15 parents (80%) felt they were either very well or well prepared for the injections under topical anaesthetic. No parent felt they were very badly prepared.
As for the child being prepared, nine out of 12 parents (60%) felt their child was either very well or well prepared for the injections under topical anaesthetic with the remaining six parents feeling the preparation for their child was fine. No parent felt their child was badly or not well prepared.
In terms of how well the child tolerated the injections under topical anaesthetic, 10 out of 15 (67%) of parents said very well or well. Only one parent felt their child did not tolerate the injections well. No parent felt their child reacted very badly.
Children were supported by the Play Specialist in seven out of the 15 episodes (47%). Six of the seven families felt that this support was either very helpful or helpful. The remaining family felt that the support was fine.
All parents/carers stated that they would allow their children to have further injections under topical anaesthetic although in the comments section one parent stated she would prefer her child to have a GA in the future.
Cost and savings
Annual reviews of the clinic carried out until the end of 2013, illustrated cost savings through reduction in the number of children having the injections done under GA.
- In 2009 anaesthetic costs were £31,500 (based on each child costing £900 when they went for a GA to have their BTX-A injections) 78% went for GA (35 GA/ 10 Topical anaesthetic (TA))
- in 2010 it was £18,900, 51% for GA (21 GA/ 20 TA)
- in 2011 it was £9,000, 21% for GA (10 GA/ 35 TA/ 3 none)
- in 2012 it was £12,600, 25% for GA (14 GA/ 39 TA/ 2 none)
- in 2013 it was £9,000, 21% for GA (10 GA/ 34 TA/ 4 none)
The number of children requiring an injection remained fairly static between 2009-2013. If 78% of children going for injection had received a GA the costs would have been as follows:
- 2010 - £28,900 (saving of £9,000)
- 2011 - £33,300 (savings of £24,300)
- 2012 - £38,700 (savings of £26,100)
- 2013 - £ 33,300 (savings of £24,300)
This savings continues with only 3 children in both 2014 (7%) and 2015 (12%) having injections under GA.
The CSPT has now established the BoNT-A clinic within Fife. The service is now more easily accessible for children and families and the need for children to undergo a GA for focal management of spasticity has been reduced. The patient experience is enhanced with fewer waits on the day and less likelihood of cancellation. See attached document for patient satisfaction survey results.
The cost saving to the organisation is considerable even when only taking into account the cost of anaesthesia and not the cost the Paediatric Orthopaedic Physician. As the CSPT is also able to inject independently as of June 2014, this will further free up the time of the Paediatric Orthopaedic Physician to focus on other areas of the Paediatric Orthopaedic service.
Demonstrating not only the cost savings but the parent satisfaction has ensured that the clinic is ongoing.
Reviewing systems and looking for a ‘better way’ is often achievable and brings additional benefits. In attempting to improve the experience of children going for BoNT-A, we were able to make cost savings to the organisation.
A cost savings of almost £83,700 between 2010- 2013 as a secondary consequence to improving the child and families experience is significant.
This information has been shared at local, national and international levels through conferences and poster presentations.
Further developments, such as the APP injecting independently has also freed up time for the Paediatric Orthopaedic Physician. This ability of the CSPT to inject independently highlights the ability of physiotherapists to work at advanced practice levels.
Collaborative working between all agencies and professionals also is of great benefit. The support from nursing has been invaluable and their offer of assistance to support Entonox/sedation has allowed us to further improve the service we are able to offer children and families. Nursing staff on the ward were already involved in using Entonox/sedation for other children and they extended their service to assist us.
Top three learning points
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Berweck S, Schroeder A.S, Fletzek U.M, Heinen F (2004) Sonography-guided injection of botulinum toxin in children with cerebral palsy. The Lancet, 363:249-250.
Chin,T.Y, Nattrass G.R, Selber P, Graham H.K (2005) Accuracy of Intramuscular Injection of Botulinum Toxin A in Juvenile Cerebral Palsy A Comparison Between Manual Needle Placement and Placement Guided by Electrical Stimulation. Journal Pediatric Orthopedics, 25(3):286–289.
Heinen F, Molenaers G, Fairhurst C, Carr L.J, Desloovere K, Valayer E.C, Morel E, Papavassiliou A.S, Tedroff K, Pascual-Pascual S.I, Bernert G, Berweck S, Di Rosa G, Kolanowski E, Krageloh-Mann I (2006) European consensus table 2006 on Botulinum toxin for children with cerebral palsy. European Journal of Paediatric Neurology, 10:215-225.
Katchburian L, Cawker S, Coombe S, Kinley E, Shaw R, Wiggans L, Will E (2008) Evidence-based Guidance for Physiotherapists. The use of Botulinum Toxin in Children with Neurological Conditions. Association of Paediatric Chartered Physiotherapists.
Koman L, Mooney J, Smith B.P, Goodman R.N, and Mulvaney T (1993) Management of Cerebral Palsy with Botulinum-A Toxin: Preliminary Investigation. Journal Pediatric Orthopedics, 13(4):489-494.
Molenaers G, Desloovere K, Fabry G, De Cock P (2006) The Effects of Quantitative Gait Assessment and Botulinum Toxin A on Musculoskeletal Surgery in Children with Cerebral Palsy. Journal of Bone & Joint Surgery, 88-A(1): 161-170.
Royal College of Physicans, British Society of Rehabilitation Medicine, Chartered Society of Physiotherapy, Association of Chartered Physiotherapists Interested in Neurology. Spasticity in adults: management using botulinum toxin. National guidelines. London: RCP,2009.
Westfhoff B, Seller K, Wild A, Jaeger M, Krauspe R (2003) Ultrasound-guided Botulinum toxin injection technique for the iliopsoas muscle, Developmental Medicine & Child Neurology 45: 829-832