"Lack of liaison in my grandson's WestMARC experience"

My grandson’s experience with WestMARC was a rough journey. We have been in touch with the service manager for WestMARC and quotes are lifted directly from her response.

The beginning

Our local physiotherapist referred my grandson to WestMARC aged three in 2020, requesting a wheelchair and sharing information with his mother on the type of mobility aid she was considering.

At this point, my grandson could sit unsupported, but could not crawl, stand or take any steps.

At assessment, WestMARC informed my daughter that they considered the requested aid an “overprescription” and instead recommended a buggy. My daughter was persuaded that this was lighter and more convenient. This was the only mobility aid he had through two years at nursery. In contrast, nursery and home received excellent support from the local OT and physio AHP team, including access to well fitted adjustable supportive seating at home and at school, which was updated as he grew.

The middle

At his final episode of physiotherapy in the community before starting school, from January to April 2022, his local physio again recommended contacting WestMARC for consideration of a wheelchair.

At age 4 1/2 my grandson was still unable to crawl, stand or take steps.

The implication of this was that school transport could not transition him safely into a taxi and a wheelchair would be required for bus transport. In addition after two years of daily use his lightweight buggy was falling to pieces. The local physiotherapist advised that WestMARC was likely to be more responsive to a family and suggested contacting them directly.

Unfortunately, my daughter did not do this immediately, being unaware of the waits currently, but did make contact as advised at the start of the school summer break. WestMARC said “we are reliant on information from referrals into our service to identify appropriate stakeholders in the patient’s care and where this information is provided it is documented to allow us to invite the stakeholders to appointments where possible“.

WestMARC also say their service is a “specialist area“. There is no doubt that their team does require highly technical knowledge and competencies to deal with the complex aids they supply, however, my grandson‘s local team are also skilled clinicians who know him well, and this discounts the most specialist person in his life – his mother.

In my grandson‘s case, his original local physiotherapist was clearly not part of the assessment and prescription process in the first place, and my daughter was not asked about local AHP stakeholders when she re-contacted their service.

School transport as predicted has not been possible, although his local council have made it available. We cannot use it and for the past six months have been forced to transport him to and from his specialist school, which is 5 miles from their home.

It is now my belief that my grandson‘s buggy may never have been an appropriate mobility aid for him and certainly quickly became inappropriate.

Had adequate liaison between WestMARC and the local AHP service happened at any point in the past two years the issues we have experienced could and should have been avoided

WestMARC said “the WestMARC team would welcome improved collaborative working. This is limited by clinical capacity. We agree that a team approach is always preferable to the smooth transition of patient’s clinical pathways and where these contacts are available to us, we will endeavour to work with them.”

The corporate answer is clearly nothing like our families lived experience.

The end in sight?

My grandson waited five months before he was offered an appointment in November 2022. WestMARC said “we recognise the importance of continuity of care, particularly for paediatric patients and their families, and this is why we have clinicians allocated to specific areas to facilitate development of positive relationships.“ So in 2 1/2 years, he has now been seen twice. With this gap between appointments “positive relationships“ are impossible to develop, even without changes in the staff.

At this appointment my daughter was asked about self propelling and accessing brakes. My grandson‘s profile includes a severe cortical visual impairment and profound learning difficulties. These questions demonstrated a very superficial understanding of his profile. Since he had been previously assessed by WestMARC this profile could and should have been available to the clinician. Alternatively in the five months we waited for an appointment any contact with his local physiotherapist before he was reviewed would’ve prevented my daughter from having to retell the story of my grandson’s distressing and complex challenges.

At this appointment, finally, a wheelchair was prescribed. Of course this is not really the end of the story.

WestMARC say “Pressures brought on by Brexit, Covid and supplies issues from overseas, also has an impact on medical device availability causing provisions delays to patients in some instances“. This definitely applies to my grandson.

At his appointment, my daughter was advised that there would be a “6 to 8 week“ delay in provision of the device and of course, with the overlap with Christmas, the reality is a nine week delay. No early Christmas present for us.

WestMARC say “funding is provided via a regional consortium of representatives of the six health board areas we cover“ and have “an active caseload of over 60,000 patients in Scotland“.

I believe that WestMARC is too poorly resourced to be able to meet the needs of the population that it serves. As a regional service covering 6 health board areas, it is not proximal enough to the child at the centre, and the team around him, to be able to really “see” them.