Update from Charles Whaley, Specialist HD Adviser
Dear Branch Members,
There are now 23 ‘Specialist HD Advisers’ (note the change in job title) plus a Youth Worker covering England and Wales – so HDA are now at full complement.
My role and contract is the same, bar an increase in mileage per month from 700 to 800; due to distances covered and extra meetings; HDA branch meetings,Carers groups, Support Groups, monthly Pop-Up HD cafes across Devon and Cornwall as planned for another 6 months, January 2015 through to June 2015, on top of the regular monthly HD Clinics held in Exeter, Plymouth and Liskeard and home visits across Cornwall and Devon. New referral rates average at around 4 new families per month. Referrals come from GPs, Community Health staff, Adult Social Care, Neurology, Psychiatry and Neuro Psychology Consultants, Genetics Nurse Counsellors, via HD Clinics and direct from family members and people with HD themselves. My current statistics show that there are 297 people symptomatic, 396 people at risk and 297 carers known to HDA as living in Cornwall and Devon at the moment, a total of 990 people supported. Devon has 179 people symptomatic, 231 at risk and 197 carers, a total of 600 people supported.
HD Awareness week was held in June 2014 – providing free MH & HD training to 22 Community MH professionals in Plymouth and surrounding areas. The next HD Awareness week is scheduled for w/c 11th May 2015 with a focus on End of Life / Palliative Care. A specific new training package and booklet will be produced for the purpose of training events and information giving. The new MH & HD booklets – ‘Mental Illness and Mental Capacity in Huntington’s disease’ were developed and distributed to MH professionals, GPs and Consultants. Aim is to ensure that people with HD have access to MH services should they need them (A long established problem area).
In May /June 2014 we distributed the ‘Guide to HD for GP’s and the Primary Health Care Team’ electronically to all GPs in Cornwall, (we hope to do the same for the Devon area) along with information about access to HD Clinics, the support available from HDA and the local Branches.
Another new booklet and a detailed document entitled ‘Standards of Care for Facilities Who Look After Residents with Huntington’s Disease’ has been created and distributed to all Care Homes known to me who are caring for residents with HD. Im aware of 72 people currently living in 35 different Care Homes across Cornwall and Devon. I continue to attend and support the 3 HD Clinics in the Devon and Cornwall area; Liskeard Community Hospital,Cornwall; Mount Gould Hospital, Plymouth and Royal Devon & Exeter Hospital, Exeter. (Recent change in Consultant at Plymouth). In most family situations that I am involved with, the need for a HDA branch grant has not been an issue, but mostly centred around help to access good health and social care support, national welfare benefits and our own support via the HDA Care Service is highly valued. Devon branch grants have enabled a single mother with HD to have a laptop computer and another grant has contributed to the cost of double glazing in a family home, where income was very low. I would like to use Branch funds to do ‘Christmas Cheer’ grants in Nov/Dec 2015 and would also suggest we advertise HDA branch funding to sponsoring individuals or families to attend national HDA events such as the Family Conference and AGM weekend in October 2015. Training of care staff at Residential and Nursing Homes and Community Care Teams continues, averaging one training session per month. HDA held their annual national Family weekend and AGM, October 3rd to 5th 2014, in Telford. This year with world renowned speaker Jimmy Pollard, from the USA, amongst others. HDA also arranged for him to speak at 3 other events across the country whilst he was in the UK. The fortnightly HD Support Group has moved premises from the old Heathleigh building at Mount Gould Hospital up to the Prayer Room at the Local Care Centre at Mount Gould Hospital, Plymouth. The HD Support Group continues to draw an average of 12 attendees, occasionally reaching 20 attendees, to each meeting. Across Cornwall and Devon we are promoting engagement with the ‘ENROLL-HD’ research trials, as new effective drug treatments become closer to reality.
The HDA’s 9am to 5pm telephone Information and Advice Service continues to be busy and is operated by a rota of Specialist HD Advisers.
The Health Commissioning Groups from Cornwall, Torbay and Devon have recently confirmed an annual grant to HDA head office of £15,000 for the 2015/16 year towards the HDA Care Support Service. This is in a backdrop of very significant budgetary cuts to health services. This is very much appreciated.
Please email Charles with any questions by clicking here
or phone Charles on: 01579 345480
Pop up & Pop in HD Cafes 2016