ME/CFS review event Kirkland hospital

Hi Everyone, 

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

He covered

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

Prevalence

  • 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.

GP Role

  • 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

Possible interventions

  • Medication – from GP
  • Medication – Following advice
  • Cognitive Behavioural Therapy
  • Graded exercise therapy
  • Relationship with GP practice

What’s going on in NHS Lanarkshire?

Referral

  • 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)

Process

  • 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

The interviews

North Lanarkshire

  • Viewpark
  • Coatbridge
  • Wishaw
  • Bellshill
  • Motherwell

South Lanarkshire

  • Carluke
  • Uddingston

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
  • Advertisement

 

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.

 

1 comment on “ME/CFS review event Kirkland hospital”

  1. Robert Anthony Frederick Reply

    This is just to add some thing to the discussion of the formation of the Conference that was the end result of meetings held with NHS Lanarkshire in 2012 in the presence of the now Health Minister Alex Neil MSP.

    Some months after the release of the Scottish Good Practice Statement there were no copies of it within NHS Lanarkshire.

    Also there was feedback to suggest GP’s didn’t know what it was despite letter from Scotland’s Chief Medical Officer.

    The eventual meeting took place in response to a clear pathway for M.E.Sufferers in Lanarkshire as their seemed to be a need for clarity.

    The email below was our response to a request from NHS Lanarkshire at the meeting which we had campaigned for over 3 years. After an initial presentation to Health and Social Welfare Services from North & South Lanarkshire entitled M.E. is not an X-File.—–

    Our perspective was on Daily Living with M.E. and A clear pathway to care/management support.

    Original Message —–
    From: scottishallianceonme
    Sent: 08/16/12 09:00 PM
    To: lorraine.fergusson@lanarkshire.scot.nhs.uk, Alex.Neil.msp@scottish.parliament.uk, coylem@northlan.gov.uk
    Subject: M.E. in Lanarkshire 2

    Dear Stephen Kerr (Head of Planning and Performance North CHP)

    Further to your letter dated 6th August 2012 of our previous meeting 26th July 2012 in the presence of Alex Neil MSP, Councillor Michael Coyle (North Lanarkshire), Dr Christopher MacKintosh (Associate Medical Director) & Lorraine Fergusson (Patient Affairs Manager).

    I now pull together some names of individuals groups and organisation’s whom I believe should be involved with this possibly the first conference on M.E. in Lanarkshire:

    Scottish Alliance on M.E. Online Self support group
    Sam and M.E. (Samantha McInnes) Online and Physical Self Support Group
    Action For M.E. Charity
    25% M.E. Group Charity
    M.E. Association Charity
    Hairmyers Hospital M.E. Group
    Long Term Condition Alliance of Scotland (LTCAS)
    Scottish Human Rights Commission

    Neurological Alliance, Would be interested in this organisation being facilitators?

    Neurological Voices Greater Glasgow & Clyde NHS Interested in having a speaker from this group which I do sit on to talk about the value of Patient Participation

    Choose Life Lanarkshire Obviously Suicide has been highlighted as one of three main fatal attributes of M.E.

    Lanarkshire Links/Lanarkshire Recovery Network: Support with other Mental Health aspects of M.E. such as Anxiety and Depression in keeping in touch with community?

    Equals Advocacy Both Advocacy Projects operate in Lanarkshire but now represent different age groups, Equals being my initial support.

    Citizens Advice Bureau

    Universal Comedy, Universal Comedy run courses and create opportunity for people with long term conditions, in the field of Comedy and acting who I believe are supported by both Lanarkshire Council’s at present? It is well recognised that laughter is a good therapy especially in the absence of a cure?

    Housing and Social Work Dept

    Hands On Project – Help and support with household chores

    These are just some that I have highlighted and names of people I have direct contact with… The organisations will be able to stipulate their own role and what they can offer, I have tried to summarize.

    Also they will be able to help generate known sufferers and obviously with M.E. a form of attendance would have to include the ability of proxy issue raising should that person not be able to attend whether Sufferer or carer?

    NHS Fife is running an Experimental Clinic for M.E. it would be good to have someone from there and Prof. Malcolm Hooper?

    Regards,

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