Challenges of spasticity management in the community

Background:

The management of spasticity, particularly in individuals with advanced MS, is a key role for community therapists. However, this presents a number of significant challenges.

Many of these individuals are unable to travel to an outpatient clinic easily, or by any means, and thus are often no longer under the care of a Consultant Neurologist or MS Specialist Nurse. This also means they are unable to attend an outpatient anti-spasticity clinic run by a local Consultant in Rehabilitation Medicine, so have no access to specialist Consultant-led care. The confidence and experience of local GPs in managing spasticity is variable.

In addition, these individuals have complex needs where spasticity is caused by and is causing multiple problems. It can be difficult or too late to manage spasticity actively given the extent of secondary complications including biomechanical changes/contractures, pain, skin integrity issues, and associated moving and handling problems. These secondary complications can represent a huge cost to health and social care.

Within local services, as commissioned at present, minimal input can be provided by therapy staff in community. Programmes to manage spasticity therapeutically are set up and passed over to family members and carers as soon as practicable. There is a wide range of carer/family member availability, knowledge and skill to deliver these programmes, plus the environments in which people live can be unconducive to programmes being delivered.

A local working party, of therapists, nurses, medics and managers, was convened to discuss these challenges and consider how these challenges could be met. The aim was to provide an efficient and effective spasticity management service for these individuals, which could be delivered within local skills and resources (as far as possible), and could be implemented with minimal additional cost.

Current Provision in the Community:

Local therapist’s knowledge of available options (including drugs for spasticity, neuropathic pain and musculoskeletal pain) is variable, with some feeling much more confident than others. At present local therapists rely on using their knowledge and skill to liaise with local GPs to discuss and guide them in prescription, but GP responsiveness is variable. Open and honest relationships have been developed to enable these discussions in many cases. The local Consultant in Rehabilitation Medicine can be approached for supervision and case discussions according to availability. However, botulinum toxin injections cannot be provided to this patient group as they cannot access outpatient clinics. As spasticity can have positive and negative impact on abilities, only being able to consider medications that globally target/reduce tone represents a challenge.

At present adjunctive treatment led by local therapists is all that is available to these individuals. This includes:

• Utilising spasticity diaries to identify triggers to spasticity and indicate areas for intervention.
• Considering positioning using a 24/7 approach. This includes provision of static and wheelchair based specialist seating, and sleep systems for use in bed.
• Provision of orthotics, can comprise of thermoplastic splinting, off-the-shelf splinting, and casting. However, therapists have to be wary of the risks associated with skin integrity and monitoring or devices, given that monitoring in the community is infrequent.
• Teaching of appropriate stretching regimes, utilising stretch within function and/or gravitational stretch wherever possible. Passive stretch is often limited by pain and available ROM given secondary complications.

Discussions:

The working party identified a number of ideal world solutions to some of these challenges:

1. Creating a community based MDT spasticity management service, including a Consultant in Rehabilitation Medicine who can complete domiciliary visits. This would utilise existing skilled Physiotherapists and Occupational Therapists, existing prescribing and injecting experience of the local Consultant, local Neurological Splinting guidelines/procedures, and follow national guidelines for botulinum toxin injections.
2. Training one or more local experienced therapists in botulinum toxin injections so a therapy-led injecting service could be provided on a domiciliary basis. This would offer a service at a reduced cost compared to a Consultant completing domiciliary visits. Supervision could be provided by the local Consultant.
3. Training one or more local experienced therapists or nurses in non-medical prescribing, with supervision provided by the local Consultant. This may reduce reliance on local GPs for prescribing of anti-spasticity medications, and provide them with additional support when prescribing decisions need to be made.
4. Establishing a local patient group direction (PGD) to enable experienced Occupational Therapists and Physiotherapists to supply and administer anti-spasticity medications to patients under planned and limited circumstances.

Outcomes to Date:

Unfortunately the local Consultant in Rehabilitation Medicine has left the Trust and this post is currently vacant. To date this post does not include any domiciliary sessions, and does not have the capacity for domiciliary sessions to be included in the future given existing responsibilities for this post. So at present the provision of a domiciliary MDT ‘clinic’ is not possible. This also means the supervision is not available to train therapists in therapy-led injecting.

At present therapists are continuing offering the existing service, with support from and liaison with local GPs as needed.

Ongoing Plans:

Local neurological rehabilitation services are currently under review with the CCG, but once this review is complete the aim is to recruit a new Consultant in Rehabilitation Medicine. Once this individual is in post the aim is to reconvene this working party to look at capacity and how to move the pathway forwards. Further progress to meet the challenges will hopefully be made at this stage.

In the interim managers are approaching the local GP Confederation to look at the benefits and risks of developing a PGD for spasticity management specifically, however, it is anticipated that this will be a long and challenging road!