Neurology patient recall: phase 2

30th October 2018

This page provides a wide range of information on phase 2 of the neurology patient recall. Phase 2 of the recall relates to patients who received letters on 30 October 2018.

Phase 1 of the neurology recall involved patients who received letters on 1 May 2018. Further information on phase 1 of the recall is available here.

For the latest information about the Neurology Recall you can read the Interim Activity Report for Active Caseload here. This report was compiled by the Regional Coordination Group, comprising of the Health and Social Care Board, Public Health Agency and Belfast Trust.

You can also download our Patient information leaflet.

Click here for external sources of support.

Neurology patient recall phase 2 further information

1. What is the background to the recall of neurology patients under the care of Consultant Dr Michael Watt?

Concerns in relation to a small number of patients were raised in late 2016 and early 2017 regarding the care and treatment provided by Consultant Neurologist Dr Michael Watt.This prompted a review process by the Belfast Trust which led to the Royal College of Physicians being asked, in July 2017, to conduct a wider independent review of his practice.

Restrictions had been imposed on the specific areas of his practice that were under review from December 2016, culminating in Dr Watt ceasing all patient care and treatment from the summer of 2017, both in the NHS and private sector.

The Royal College of Physicians delivered its report in April 2018. Acting on its expert findings and recommendations, the Belfast Trust recalled some 2,500 patients, between May and August 2018, who were still attending Dr Watt’s clinics prior to his cessation of active practice.

A number of patients who were under the care of Dr Watt in the private sector were also recalled. The Ulster Independent Clinic reviewed 82 patients and Hillsborough Private Clinic reviewed fewer than five patients.

2. Who is being recalled?

Specific groups of patients previously seen by Dr Michael Watt and subsequently discharged to the care of their GP between 2012 and 2017 are being offered review appointments, to ensure they are on the correct treatment.Letters have now been issued to 1,044 individuals offering appointments with neurology consultants.

The process involves individuals who are taking certain specialised medicines for neurological conditions and is based on the clinical advice from the team of consultant neurologists who reviewed patients from May 2018. Specialised medications for these neurological conditions includes anti-epileptic drugs, immunosuppressants, and disease modifying therapies which are used to treat conditions such as epilepsy and Multiple Sclerosis.

These review appointments have been initiated to provide assurance that individuals are on the correct treatment. They are scheduled to be completed within a four month period.

It is important not to cause undue alarm to anyone who has ever attended one of Dr Watt’s clinics in the past.

This phase of the recall is being concentrated on specific groups of patients taking particular, specialised medicines for neurological diseases. If you are a past patient and do not receive a letter, you do not need to take action or to get in touch.

The 1,044 total for this new review includes 700 patients who were treated within the health service and 344 who had been private patients at either Ulster Independent Clinic or Hillsborough Private Clinic.

It is important that all those who receive a letter do not stop, or make any adjustments to, their medications until they have been reviewed by a consultant neurologist at their appointment.

3. What is the outcome of the first phase of the recall?

All patients have received a first review appointment, and over 600 have been discharged. To date 1,672 diagnostic tests have been requested and this process is ongoing such as MRIs, CT scans and EEG tests. The outcomes of the first phase of the recall will not be available until all investigations have been fully analysed.However, the decision to offer appointments to 1,044 patients, previously discharged by Dr Watt as part of the second phase of the recall process, has been determined after consultation with the clinical team of neurologists in the Belfast Trust. This decision has also been shared with the Royal College of Physicians who have described them as ‘very sensible’ and in line with their initial findings. Based on our learning from the initial recall, individuals have now been identified by the specialised medicines they are being prescribed for neurological diseases.

4. How is the system coping with this?

We fully understand how worrying it is for any person who has been recalled, and equally worrying for their families and carers. Staff are working very hard to ensure that patients are seen as quickly as possible.Additional clinics have been put in place specifically for these patients. The recall will not impact on the other work of neurology services and no patient will be disadvantaged as a result of the recall.

5. What is the process for the second phase?

As in the first phase, each person will receive an appointment lasting 30 – 45mins. The length of each consultation is determined by each person’s needs. The consultant neurologist may decide that additional tests and investigations are required.A fast track system is in place to ensure patients attending the recall service do not have an extended wait for their investigations. It takes approximately three to four weeks after the initial appointment for most tests to be completed.

6. How many discharged patients are you recalling as part of the second phase?

1,044 people have been recalled:

7. How have these discharged patients been identified?

Following the review of 2,500 neurology patients earlier this year, a decision has been taken to recall a further 1,044 people who had been seen by Consultant Neurologist Dr Michael Watt and discharged into the care of their GP. The decision on who to offer appointments to, as part of this second phase of the recall process, has been determined after consultation with the clinical team of neurologists in the Belfast Trust who conducted the first phase of the review. This decision has also been shared with the Royal College of Physicians who have described them as ‘very sensible’ and in line with their initial findings.People who had been prescribed certain medications for neurological conditions are being offered review appointments to ensure they are on the correct treatment. Specialised medications for these neurological conditions includes anti-epileptic drugs, immunosuppressants, and disease modifying therapies which are used to treat conditions such as epilepsy and Multiple Sclerosis.

These new appointments are being arranged on the clinical advice from the team of consultant neurologists at Belfast Trust.

8. What about the independent sector – are they involved in this phase of the recall exercise?

We have secured additional clinics from the independent sector to support the clinical team of consultants at Belfast Trust.

9. How much has the exercise cost so far?

This is not about cost, it is about people. However, there is a financial cost. The first phase of the recall has cost approximately £1m. We will know the full cost of the second phase when it is completed.

10. What are the implications on the neurology services continuing to work under this pressure?

Our staff are working extremely hard. The whole system has come together to ensure that recalled patients are seen and staff are fully committed to seeing each patient requiring an appointment and discussing their individual care with them. Crucially, these appointments are additional and are not impacting on the core neurology service, which has continued uninterrupted.

11. Has any harm been caused to patients?

This will take time to properly determine. The focus of the work to date has been to reassure patients, families and the wider HSC that every individual is on the correct care pathway, all identified patients will be reviewed with follow up tests carried out as appropriate. These are people with a range of neurological conditions many of which are complex and debilitating. Individual patients are informed of the outcome of their review by the neurologists that see them.It is important that we allow space and time for the clinical teams to undertake this work.

12. What is being done about the redress scheme?

The Department of Health has made clear the intention to create a redress scheme. Work will commence shortly on scoping options for developing such a scheme, including how harm will be assessed and how the scheme will be administered.

13. What is happening with Dr Watt?

Dr Watt is currently not seeing patients and the Trust is managing the concerns regarding Dr Watt in accordance with, “Maintaining High Professional Standards” which is the Departmental Framework for the management of any and all concerns regarding doctors.It is important that all information, particularly any which may become available from the recall of patients, is thoroughly and rigorously considered and investigated. And this process is still ongoing.

14. Will the Independent Inquiry Panel be considering discharged patients as part of its remit?

The Inquiry has a very specific remit – to investigate the circumstances which led to the recall of patients in May 2018; to review Belfast Trust’s handling of complaints or concerns identified prior to November 2016; and to identify any learning. As part of its investigations, the Inquiry can seek commentary and evidence from any patient or their family who is receiving or has received care from neurology services. The Inquiry launched a public engagement exercise on 8 October, which provides a mechanism for patients, former patients, relatives of patients and health care workers who have had experience of Neurology Services. Further details are available at: www.neurologyinquiry.org.uk.

15. How will the Health and Social Care review the wider issues and ensure lessons are learned?

There are clearly important wider questions which will need to be addressed both to fully understand and assess the impact of what has happened and also to ensure that we can have confidence in the safety of neurology services now and in the future.The Department has already directed RQIA to undertake a review of governance of outpatient services in the Belfast Trust with a particular focus on neurology services. The review will then be extended as part of its rolling programme of inspections to cover all five HSC Trusts in NI. The Department has also asked the RQIA to commission a parallel piece of work to ensure that the records of all patients or former patients of Dr Watt who have died over the past ten years are subject to expert review.

The Department of Health has also previously announced the establishment of an independent inquiry panel to review the recall of neurology patients by the Belfast Health and Social Care Trust. The inquiry will review the process initiated by the Trust in December 2016, in relation to concerns raised about the clinical practice of Dr Michael Watt. In addition, the panel will assess whether any complaints or concerns relating to Dr Watt prior to December 2016 should have provided grounds for earlier intervention. The Terms of Reference of the Independent Review can be found at: www.health-ni.gov.uk/news/neurology-inquiry-panel-terms-reference-published.

A regional co-ordination group, chaired by the HSCB and PHA, comprising Trusts and private healthcare providers, has been established to ensure consistency in approach and to provide assurance to the Department of Health on the steps being taken to review and provide support to affected patients.

16. What should affected patients and families do if they are concerned?

Anyone who is worried and who is seeking further support should phone the advice line on 0800 980 1100, and/or contact their GP or private healthcare provider (if appropriate).We would also ask all patients who received a letter to please call the appointments line to book an appointment if they haven’t already done so.

We would also stress that anyone who has received a letter should not stop or make adjustments to their medication until they have been reviewed by a consultant neurologist at their appointment.

External sources of support

The Dystonia Society
89 Albert Embankment, London, SE1 7TP
Office: 020 7793 3651
Helpline: 020 7793 3650
Helpline email: support@dystonia.org.uk

The MS Society
34 Annadale Avenue, Belfast, BT7 3JJ
Counselling service: 028 9080 2802
Email: nireception@mssociety.org.uk
Helpline: 0808 800 8000 – free from all UK landlines and mobiles. 9am-7pm Monday-Friday except bank holidays
Helpline email: helpline@mssociety.org.uk

MND Association
Helpline: 0808 802 6262
Helpline email: mndconnect@mndassociation.org
Website: www.mndassociation.org/getting-support/local-support/branches/northern-ireland-branch/

Headway The Brain Injury Association
C/O Regional Acquired Brain Injury Unit, Musgrave Park Hospital, Stockman’s Lane, Belfast, BT9 7JB
Contact: 078 2690 9110
Contact email: johny.turnbull@headway.org.uk
Nurse Led Confidential Helpline: 0808 800 2244
Helpline email: helpline@headway.org.uk

Epilepsy Action
Helpline: 0808 800 5050 – free from all UK landlines and mobiles. 8.30am-5.30pm Monday-Friday
Helpline email: helpline@epilepsy.org.uk (we aim to reply within 48 hours Monday-Friday)
UK text messages: 0753 741 0044 (we aim to reply to texts within 24 hours Monday-Friday)
Tweet @epilepsyadvice with your question and we will tweet back Monday-Friday

Parkinson’s UK Northern Ireland
Wellington Park Business Centre, 3 Wellington Park, Malone Road, Belfast, BT9 6DJ
Contact: 028 9092 3370
Email: hello@parkinsons.org.uk
Helpline: 0800 800 0303 Text relay: 18001 0808 800 0303
Helpline is a free and confidential service available Monday-Friday 9am-7pm and Saturday 10am-2pm (closed Sundays/bank holidays)
Website: www.parkinsons.org.uk/about-us/parkinsons-uk-northern-ireland
Parkinson’s Local Advisors covering each of the health trusts can be contacted via our Service Manager Patricia Jordan on 0344 225 3682

Syringomyelia Arnold Chiari Association
4 Broughton Park, Belfast, BT6 0BD
Email: saca.info@yahoo.co.uk

Brainwaves NI (supporting those affected by a brain tumour)
26 Fairview Avenue, Whitehead, Co. Antrim, BT38 9NU
Office: 028 9335 3995
Email: K.ferguson@brainwaves-no.org