At this month’s Tynwald sitting Home Affairs Minister Graham Cregeen will move a general debate on M.E. which a local support group hopes will bring much needed clarity on this highly debilitating condition that affects over 300 people on the Isle of Man.
M.E. Support Isle of Man has written this piece which explains their frustrations and motivations with trying to improve services for sufferers on the island.
For Manx M.E. sufferers and their families, it has been a long wait for a comprehensive support service. As Health Ministers have come and gone and promises have been made, concerns have been raised and fended off in Tynwald but the tangible steps required to establish an effective M.E. service remains absent.
In 2019, DHSC Minister David Ashford promised the establishment of an M.E. Service pilot scheme in 2019 with a full service established by April 2020 but nothing has yet materialised. M.E. Support IoM’s most recent discussions with Minister Ashford confirm his sincere desire to help, but clearly his own deadlines have sadly passed and without the promised action.
M.E. sufferer and Vice President of M.E. Support IoM, Craig Morris explained: ‘Simple practical steps must now be implemented. This is a complex illness, but the healthcare requirements are relatively low cost and straightforward compared to many other illnesses.
‘Any patient-centred health service must recognise that Covid sufferers require aftercare. As the treatment of the growing number of people with long-covid mirrors the treatment received by M.E. patients, the need for a comprehensive M.E. service is greater than ever.’
In September 2020, M.E. Support Isle of Man provided Mr Ashford and his department with a proposal document outlining how to implement an M.E. Service on the island. Craig added: ‘We were confident this additional guidance would be the final piece in the jigsaw to break the impasse. The document highlights the simplicity of our proposal and it was striking how little effort would be required to get a service off the ground.’
Juan Corlett has struggled with M.E. over the past eight years and had to seek private help from the UK. His condition is now steadily improving and he explained his frustrations with the delay:
He said: ‘In our view, an M.E. service could be implemented, virtually overnight, using existing staff members and with little disruption to their other responsibilities. The key role would be for an Occupational Therapist, working alongside GPs. Some oversight and assistance would be required, although this would reduce over time and we have offered the department the details of individuals who could provide this oversight.’
Severe cases can leave sufferers unable to work for anything between a year and a lifetime. The estimated average cost to the taxpayer, including the cost of social security benefits and loss of tax and NI revenue, of each severe case of ME is roughly £18,000 per year. Even excluding the effects of long- covid cases, it is estimated that the Isle of Man sees eight new severe cases each year.
Juan continued: ‘Considering the cost of each sufferer to government finances, can we afford to delay the implementation of a relatively low-cost health provision any longer, even ignoring the emotional and physical torment this illness creates?’
Craig says he is hopeful that the debate will help expose some of the myths about M.E. and give everyone a better understanding about the condition. Considering his condition means that any activity is an enormous effort for him, Craig has put a huge amount of work into researching and fighting for a better M.E. service.
He said: ‘We have strived to work with the DHSC, but the constant disappointments have left us deflated. With every new case we encounter, we find sufferers symptoms worsen as a result of inadequate or inappropriate support. Despite this ongoing reminder of the human cost of the lack of provision, we remain hopeful that the Minister will keep his promises and keen to offer logistical advice as required to the new Manx Care team. The talking time is over; it’s time for action!”
To coincide with the debate, a demonstration is planned to take place outside the Tynwald Building at 1.30pm on Tuesday May 18, organised by M.E. support committee member, Hazel Jordan who has held a number of M.E. protests outside Tynwald over recent years.
For some historical context, M.E Support IoM has also included a timeline of key dates in the campaign to improve the island’s care for M.E. sufferers:
- 1988 – ME Support IOM founded because of shocking treatment of people with M.E.
- Winter 2014 – Health Minister, CEO & Medical Director of DHSC agreed that ME service was required
- Feb 2015 – GP with Special Interest appointed & ME Steering Team established
- February 2018 – Budget for 2018/19 includes specific funding for dedicated ME service (Per Liberal Vannin – £90k funding had been agreed by former Health Minister Kate Beecroft)
- Sep 2018 – GP with Special Interest unable to continue
- July 2019 – with no progress made Tynwald petition presented seeking an ME service ASAP with 2,706 signatures
- October 2019 – David Ashford promised the establishment of an ME pilot scheme in 2019 and full service by April 2020
- Early 2020 – Covid outbreak gives clear extra incentive to introduce an ME service to support the inevitable development of ‘long covid’/M.E. cases.
- Summer 2020 – DHSC fails to make headway, so local ME sufferers prepare yet another advisory document setting out the very straightforward steps required to implement a service.
- 2021 – small local self-help charity continues to be overwhelmed by the needs of so many people falling between the cracks