On Monday Laura and Lynsey were at the meeting for ME/CFS NHS Review representing Sam and ME, below is a report that contains information given at the meeting.
We would just like to say getting a bunch of people including a GP representative, ME/CFS sufferers, and Lanarkshire NHS together was a step forward for sufferers. We are getting noticed and acceptance of this debilitating illness is a step in the right direction. We look forward to seeing the report for changes that are needed to help us.
ME/CFS review event Kirkland hospital medical education training centre fallside road Bothwell
The purpose of this meeting was to work with the ME/CFS NHS commitment, The role of the GP, the patients experience and to work in groups to capture the current care provisions available to Lanarkshire patients seek to understand and improve where possible.
We heard from Kenny Small NHS director of human resources, interim lead south Lanarkshire community health partnership
Ageing population, increasing incidences of long term conditions, public health challenges owing to lifestyle choices, workforce pressures, and constrained resources
He outlined their commitment to ME/CFS suffers as follows
- To circulate the Good Practice Statement to all GP’s and relevant specialist services in Lanarkshire
- To review the current support available to people diagnosed with ME/CFS
- To map these against the Scottish good practice statement 2010
- Consider any gaps and shortfalls in services
- Work with key stakeholders and informants consider what improvements we can make to how we currently support patients.
The NHS quality Strategy 3 quality ambitions
- Person – centred – Mutually beneficial partnership between patients, their families, and those delivering healthcare services. Partnerships which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision- making.
- Safe – NO avoidable injury or harm from the healthcare they receive, and that they are cared for in an appropriate, clean, and safe environment at all times.
- Effective – The most appropriate treatments, interventions, support, and services will be provided at the right time to everyone who will benefit, with no wasteful or harmful variation.
DR Chris Mackintosh Associate medical director south Lanarkshire community health partnership/GP lead for neurology.
He told us of what is going on in NHS Lanarkshire
- Estimate of at least 0.2-0.4%
- Anyone, Woman aged from 35-55 years NHS Lanarkshire 1000-25000
- The Who; Myalgic Encephalomyelitis (ME) including post viral fatigue syndrome (neurological diseases) ICD 10 G93.3 (code)
It is helpful to create a list of all current symptoms as ‘ Polysymptomatology’ is a significant diagnostic clue.
- Exclude: other possible causes of fatigue
- Enquire: about travel, tick/insect bites, unusual infections, drug and alcohol use
- Review: Current prescribed medication
- Height & Wieght (obesity, glandular disorders)
- Standing and lying blood pressure (Addison’s disease)
- General medical and neurological examination
- Medication – from GP
- Medication – Following advice
- Cognitive Behavioural Therapy
- Graded exercise therapy
- Relationship with GP practice
What’s going on in NHS Lanarkshire?
- For assistance with management where there is diagnostic doubt
- Pathway to diagnoses
- Will need to be modified appropriately by NHS boards, to take account of local services development and provisions.
Tony Fitzpatrick change and innovation manager interviewed 8 ME/CFS sufferers to find out the following:
- When they first became ill
- How they were investigated and diagnosed
- Who made the diagnosis
- What support has been available to them
- What helps and what doesn’t
Our aim was to:
- Listen to patients from across Lanarkshire
- Learn from their experiences
- Share learning
- Compare their experiences against the Scottish good practice statement on me/cfc (nov 2012)
- We asked GPs (Lanarkshire ME support Group) to identify patients willing to be interviewed
- We made appointments to meet patients in their homes
- We wrote down their stories
- We asked them to check that we got it right
What we learned
Each patient’s experiences are unique – there are similarities and differences.
ME/CFS has a major negative impact on quality of life – the condition affects daily activity, employment, relationships, self esteem…….and more.
But we didn’t learn anything about diagnostic practices since the good practice statement was issued in 2010
We also learned
Some people do not agree with the Scottish good practice statement on ME/CFS (Nov 2010)
- Having a supportive GP makes a difference
- Patients become experts
- Patients progress to self management
- Patients access complementary and alternative medicines.
- Good practice statement on ME/CFS (Nov 2010)
- To what extent do these experiences reflect good practice What are the gaps and shortfalls
- What improvements can we make to how we currently support patients
- We all split up into groups to discuss the good practice and experiences with NHS
- What currently exists
- What works well
- What doesn’t work well
- What does not exist/is not available to people in Lanarkshire (possibly provided as a tertiary service in NHS greater Glasgow & Clyde)
What improvements can we propose to how we currently support patients
Headlines form group feed back
- GP awareness is essential
- Clinic for sufferers
- Early diagnosis
The information gathered today and writes up a report of the workshop to reflect our current provisions any gaps and improvement proposals
Present the report to NHS Lanarkshire modernisation board.