Update from Charles Whaley, Specialist HD Adviser
Dear Branch Members,
There are now 23 ‘Specialist HD Advisers’ plus 2 Youth Workers covering England and Wales – so the HDA’s family Support Service is now at full complement.
Devon and Cornwall HDA branch meetings, Carer’s groups, Support Groups, Pop-Up HD cafes, social events and fund raising events continue regularly across Devon and Cornwall throughout the year. (see branch newsletters and the national and local website for details)
I’m very happy to be able to respond to requests for home visits and telephone and email contact from family members and professionals who work across Devon and Cornwall.
New referral rates average at around 4 new families per month. These 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.
I’m currently aware of 67 people living in 35 different Nursing, Residential or Supported Living Homes across Devon, Cornwall and the Channel Islands. Training of care staff at Residential Homes, Nursing Homes and Community Care and Nursing Teams continues as a regular feature of my role. This raises awareness among professional staff and improves the quality of care and understanding given to the people they serve.
HD Awareness Week is an annual event covering England and Wales and in May 2018 public buildings were lit up in the colours of the HDA, that of Pink and Green, to highlight HD and raise public awareness. In Plymouth we were able to light up Smeaton’s Tower on Plymouth Hoe for the entire week. Family members gathered there at dusk to socialise and celebrate this event.
Other events this year have been the Devon and Cornwall Branch combined event, the Zipwire and Pasty Challenge held on 1st September at the Adrenalin Quarry, Menheniot where 24 people took the challenge and raised around £3,000 for HDA, as well as having lots of fun.
A Summer BBQ event was held at Silverton, Nr Exeter on the 18th August with over 60 people attending the afternoon event enjoying burgers, hot dogs and drinks, as well as the infamous raffle with many prizes.
I continue to attend and support the health teams at HD Clinics in the Devon and Cornwall area; these are held at Liskeard Community Hospital, the Local Care Centre, Plymouth and at the Royal Devon & Exeter Hospital, Exeter.
Support to access national welfare benefits; such as PIP, Attendance Allowance, ESA, Blue Badges, Bus Passes and our own support via HDA Branch Grants are highly valued. The grants are targeted at improving the quality of life for people and families where there is HD. One off grant payments have been made for a wide variety of reasons, including assisting families in attending national HDA events.
The fortnightly HD Support Group meets regularly at the Local Care Centre, Mount Gould Road, Plymouth. The Group continues to draw an average of 12 attendees, occasionally reaching 20 attendees, to each meeting. The mutual support, advice and expertise available from and to family members is well valued.
Across Cornwall and Devon, we are actively promoting engagement with the ‘ENROLL-HD’ research trials registry, as new effective drug treatments become closer to reality. We hope in the near future to be able to offer new opportunities for treatment.
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, including myself. As well as this, the HDA website; www.hda.org.uk offers lots of useful information to view and download on a wide variety of topics.
Please get in touch if you have a query or feel that may be able to help in any way.
Best wishes, Charles Whaley
Specialist HD Adviser
Specialist HD Adviser
Please email Charles with any questions by clicking here
or phone Charles on: 01579 345480