What the Department of Health and HSCB said about services for patients with HD

Detail Data put a series of questions to the Health and Social Care Board and the Department of Health. They failed to address many of the questions. Here is a full copy of the questions and their answers.

Questions and answers for the Health and Social Care Board:

1) Why if the service is regionally funded by the HSCB are only patients in two trusts (Belfast and South Eastern) receiving support from an HD nurse?

2) How much annual financial support is HSCB providing to Belfast Trust for the HD specialist nurse provision?

3) HD patients in the Western, Southern and Northern Trusts have told Detail Data they are angry about the inequality in provision. They feel discriminated against because they don’t have access to the same provision as patients living in the Belfast and South Eastern Trusts, what do you have to say to those patients?

4) Are there any plans to provide additional funding so patients in the other three trusts also have access to an HD specialist nurse?

5) It has been 10 years since the Northern Ireland Needs Assessment Huntington’s Disease (commissioned by HSCB) – and many of those recommendations have still not been acted on. Why? Has that report been shelved?

The Health and Social provided the following response: “The Health and Social Care Board and Public Health Agency are working closely with the NI Rare Disease Partnership and other key stakeholders to develop a programme of work to improve care pathways across Neurology, including Huntington’s Disease. The aim of this work is to ensure that people receive a co-ordinated and consistent service across Northern Ireland. We are also taking into consideration the experiences and views of service users, carers and staff.

“The Board and Agency have met recently with the Huntington’s Disease Association (NI) and will continue to engage with them over the coming months.

“The Belfast Health and Social Care Trust is currently developing a range of options to optimise the information, advice, and emotional support to patients and their families. The options will be submitted to the Board and Agency in the coming months.”

Questions and answers for the Department of Health

Q1: Why is there an inequality in service provision for patients west of the Bann? Patients in the Western, Southern and Northern Trust have no access to a specialist HD nurse. Is it correct that it would cost around £170,000 to make the service NI wide? Is any of the extra funding for health coming from Westminster as a result of the DUP/Conservative deal being spent on HD provision?

A1: See answer 2.

Q2: Is the Department doing anything to address the situation and ensure equality of service provision for everyone in NI with HD as set out in the NI Implementation Plan for Rare Diseases.

A1&2: “The modernisation of Neurology services currently being led by the HSCB aims to improve the clinical management of all neurological conditions, including HD. This work includes consideration of how best to meet the need for specialist nursing provision across the region. The overall aim of this work, in line with the vision set out in both the Rare Diseases Implementation Plan and in Delivering Together, is to ensure that patients have access to generic services as required, as well as access to specialist nursing or medical care when needed.

“In the meantime, those diagnosed with Huntington’s Disease continue to have access to the full range of core community health and social care services across Northern Ireland including physiotherapy, occupational therapy, community nursing, speech and language therapy, dietetics, social work/social care, domiciliary care, day care and day time opportunities and respite, including specialist respite.

“The Secretary of State's statement on 19 July, setting out indicative budget allocations for the 2017-18 financial year, did not include any of that additional financial support relating to the “Confidence and Supply” Agreement between the Conservative and the Democratic Unionist Party . We have been advised that it is for a restored Executive to agree how it wishes to allocate those funds to projects within the priority areas, and as such, they are not available for allocation by departments at this stage.”

Q3: HD patients have told Detail Data they feel abandoned, are being put at risk, isolated. How do you respond to those patients?

A3: “The HSCB and PHA have met recently with the Huntington’s Disease Association (NI) and will continue to engage with them over the coming months in relation to addressing these concerns through the modernisation of neurology services. In addition, the Belfast Health and Social Care Trust is currently developing a range of options to optimise the information, advice, and emotional support to patients and their families. The options will be submitted to the Board and Agency in the coming months.

“In order to improve the HSC’s support to those living with neurological conditions, the Public Health Agency has supported the Belfast Trust in establishing the Regional Neurological Care Advice Service: http://www.belfasttrust.hscni.net/services/NeurologicalCareAdviceService.htm. The Department has encouraged HDANI to develop links with this new Service (which operates across the whole of Northern Ireland) to ensure that this aspect of service provision is fully sensitive to the needs of those living with HD, and that it is aware through HDANI’s expertise of the support available to HD patients from within the statutory sector.

“The Department has also been working with the NI Rare Diseases Partnership to carry out a communications review under one of the key themes of the Rare Disease Strategy: Empowering those affected by Rare Diseases. A number of patient engagement workshops were held across Northern Ireland earlier this year which were attended by, among others, HD patients. The findings of the review are being finalised, however they will reflect these types of concerns which have expressed by HD and other Rare Disease patients, and recommend ways in which methods of communication may be enhanced. Related to this, the NI Rare Disease Partnership is about to commence a 2 year pilot outreach project – Stronger Together – using Big Lottery funding. Under this Project, two part time outreach officers covering all of Northern Ireland will establish and develop linkages between individuals, health and relevant public services, and rare disease support groups. See http://www.nirdp.org.uk/next-steps-staff/ for further information.”

Q4: I understand the Permanent Secretary had refused to meet the Huntington’s Disease Association – the only support charity for people affected by HD to discuss their concerns earlier this year. He also said there were no plans for a regional HD strategy and had said he would encourage HSCB and Belfast Trust to renew their efforts in regard to filling the second post for an HD care advisor. Has there been change to any of these in the interim?

A4: “There are currently no plans to produce a regional strategy or framework specifically for Huntington’s Disease, however the Department has assured HDANI of its commitment, alongside other UK Health Departments and the Department of Health in ROI, to a strategic approach to rare disease issues. The Department, along with the Health and Social Care Board (HSCB), the Public Health Agency (PHA), and other stakeholders including the Northern Ireland Rare Disease Partnership (NIRPD), has been working to translate the UK Strategy into action in accordance with the priorities identified in the Northern Ireland Implementation Plan, which we published in 2015.”

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