Mini-debate on ME/CFS in the Northern Ireland Assembly | 8 November 2016

November 8, 2016

Source: Northern Ireland Assembly Date: November 8, 2016 URL:

[Oral Answers to Questions]
ME: Specialist Services

Thomas Buchanan (Democratic Unionist Party, West Tyrone)

Mr T Buchanan asked the Minister of Health to outline the specialist services available for people diagnosed with myalgic encephalopathy. (AQO 613/16-21)

Michelle O'Neill (Sinn Fein, Mid Ulster, and Minister for Health)

Since 2013-14, the Health and Social Care Board (HSCB) has provided funding to the Northern Health and Social Care Trust for a pilot condition management programme with specialist knowledge and expertise in helping people diagnosed with ME. ME patients, as recommended by the National Institute for Health and Care Excellence (NICE), were placed on supported self-management programmes specifically adapted to take into account their unique needs and offering lifestyle advice and coping techniques in 12 sessions. The pilot was successful and is now funded recurrently. A similar model is in place in the Belfast Trust.

The Health and Social Care Board is working at present to recruit a regional medical lead for ME, and, when successful, it will consider how best to
deliver the specialist ME knowledge and expertise across all remaining health and social care trusts.

Thomas Buchanan

I thank the Minister for her response. Does she agree with me that Northern Ireland needs a specialist consultant in the field, given the number now suffering from ME? Will she consider bringing forward someone of that calibre for this condition?

Michelle O'Neill

When taking decisions on the way forward, it is important that we evaluate what has been done. The pilot will feed into the evaluation and allow us to assess what is required. Suffice to say, the board is working to recruit a regional medical lead. I think that that answers your question.

It is important that we continue to support those with ME. There has been investment over the past number of years, and it is important that we continue to build on that good work, in the spirit of Delivering Together – our new way of working – and design services that are fit for purpose and meet the needs of those who suffer from ME. When designing those services, we need to listen to patients, carers, families and staff who provide services on the front line.

Jo-Anne Dobson (Ulster Unionist Party, Upper Bann)

Now that the ice is finally beginning to thaw around support and services for people suffering from chronic illnesses such as ME, what guarantees will the Minister give that the charities fighting so hard will be fully involved in design and delivery?

Michelle O'Neill

I am not sure what the Member means when she says that the ‘ice is … beginning to thaw', but involving patients, carers, families and service
deliverers in the design of services is at the core of the new way forward. The strategic direction, which I have set out, very clearly puts the needs of the patient at the centre of decision-making.

It is really important that people feel ownership, understand why things are done in a certain way and are part of designing the care pathway that
they will need to use. As we go forward, the service is very much patient-centred, but, in order for us to be successful in delivering better outcomes, we need to listen to everybody's voice.

Pat Sheehan (Sinn Fein, West Belfast)

What condition management programmes are offered to ME patients?

Michelle O'Neill

All health and social care trusts offer condition management programmes to help participants with a range of health problems to better understand and manage their conditions.

Only the Belfast Trust and the Northern Trust offer specialist programmes for ME patients. Those are 12-week, voluntary, work-focused programmes to help participants with a range of health problems to understand and manage their condition, become engaged in more meaningful activity and return to work or
training, either now or in the future. Examples of condition management programme sessions include problem management; assertiveness; building confidence and self-esteem; healthy lifestyle; getting a good night's sleep; stress management; managing low mood and depression; fatigue management; anxiety management; pain management; back care; and what is next after the condition management programme (CMP).

The programmes also receive funding from the Department for Communities and are targeted to persons with a variety of long-term health problems and primarily to those in receipt of health-related benefits.

Mark Durkan (Social Democratic and Labour Party, Foyle)

The Minister touched on my question at the end of her answer. What ongoing engagement has she had with the Minister for Communities regarding improving the condition management programme?

Michelle O'Neill

As I said in the previous answer, the Department for Communities obviously funds those whole areas of work that I set out. That is really important. Going forward with a new-style Programme for Government that is very much outcomes-focused will allow us to work collectively a lot more.

I think we will see in the Programme for Government how Departments need to interact. We do not have the luxury of working in silos. We have to work together. For me, the need to coordinate, collaborate and ensure that we design services and support people is key, whether that be within the health sector or working in conjunction with the community and voluntary sector. I think the Department for Communities and I will have a lot of overlap in how we can support people better. I am looking forward to that.

Paula Bradshaw (Alliance Party, South Belfast)

Minister, I ask you to go back to your original statement on recruitment of a regional medical lead for the Belfast Trust. Given that it has been trying for months to recruit that lead to no avail, will you comment on what your Department is doing to try to address the issue?

Michelle O'Neill

As a member of the Health Committee, the Member will be very aware that there are recruitment difficulties right across the piece. It is very difficult to recruit into posts, but we have to keep trying. We cannot just say we have not been successful one time and then give up. We will have to headhunt people where necessary. We have to do absolutely everything we can to attract the right clinicians to support the population here.

I am assured that the board, in conjunction with the trust, is doing absolutely everything it can to make sure we recruit someone into that post. I am very happy to update the House on progress on that in the future. I think it is important that we establish that regional medical lead. It will allow us to give confidence to patients that there is regional oversight and one medical lead and that that will filter right across, no matter where you live in the North.

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