The HSE are currently surveying members of the public and organisations to gather views on healthcare priorities.

Based on your responses to the DSI health care survey last year, along with issues highlighted recently by members, we have submitted an organisational response from DSI.

We have focused on difficulties and frustrations you described, such as:

• The frustration and distress caused by

• delayed diagnosis of physical conditions (hearing loss, sleep apnoea, arthritis, keratoconus)

• delayed access to healthcare and therapy services (SLT, OT, Physiotherapy, Psychology, audiology, optometry) with some services effectively unavailable for long periods.

• inappropriate or unavailable adult services (young people placed in nursing homes, or only being given one option when they leaves school)

• An overall lack of person-centred, joined-up thinking in terms of healthcare and disability services.

• The failure to put policies into practice. (For example, “New Directions” highlights the importance of adults being able to manage their own lives, yet the individualised funding project which was central to this has been watered down into a small scale pilot of personalised budgets that has to be managed within existing HSE funds and through existing HSE services)

• The pressure that a dysfunctional health and disability service puts on people with Down syndrome and their families. Family carers are an undervalued resource, and they are being pushed to breaking point and beyond by the lack of support being made available.

We suggested that as a priority the HSE needs to address:

• Staffing issues. Therapy posts unfilled. Long waiting lists for outpatient appointments and procedures. An unofficial recruitment ban in many areas which has not gone unnoticed by our members. Therapists on maternity leave, carers leave, or long term sick leave not being replaced. Posts being left vacant due to budget constraints.

• Hospital capacity issues. Not enough hospital beds, limited space to stay with sick children. Long waiting lists.

• Funding and capacity issues for disability services. Families are who need homecare support for adults with dementia being told that they are eligible for support, but there is no budget to provide it. Adults who need urgent respite or residential care being placed in nursing homes with people decades older as there are no appropriate services made available.

We also highlighted the importance of specialist Down syndrome clinics, and the need for these to be provided regionally.

Our response was a general one, based on current issues and feedback from you.

We would like to encourage everyone to also fill in an individual response, to let the HSE know your priorities for change.

The closing date for the survey is Monday 17th February.

The survey can be found on the HSE website or by following this link: