3rd November 2016

Minutes of the meeting

In attendance: Rod C, Angela D, Carolyn G, Dick and Hazel L, Brian L, Brian U, Tim and Francis W, Terry G, Geraldine M, Dianna W.

1. Apologies: Were received from Chris & Lawrie S, Margaret and John I, Sue C, and Elaine G-J.

2. Matters arising from minutes of Oct meeting

Terry reported that because of the confusion about definitions – he sent a draft of the minutes to Kerry to correct – what she thought she said, what Terry thought she said, what she intended to say and what she should have said – which we now have.

3. Guest speaker

Dr Karen Irvine (Psychologist Clinical Studies Officer HPFT) updated us on several major studies involving both users and their carers.

REACT – (Relatives Education and Coping Toolkit)

Focus -is on Bipolar or psychosis to evaluate effectiveness of the on-line toolkit support

Purpose – to improve relative’s wellbeing

Eligibility – Relative must be 16+  have access to the internet, be able to understand written and

verbal English and take part in 3 Wellbeing assessments over time (£10 voucher each time)

Process – a modular approach with the comparison of one group who will receive the Toolkit plus a

Resource Directory and another group who will only receive the Resource Directory.

Question to answer – will the Toolkit and Resource Directory help reduce stress levels?


Karen asked the group if anyone was interested in taking part to contact her on 010707 253836 Karen.Irvine@hpft.nhs.uk

AASC –  (Adult Autism Spectrum Cohort) Run by Newcastle University

Focus -is Adults on the Autism Spectrum of all ages and abilities and their relatives

Purpose – How does Autism change through adult hood?

Eligibility – Adults 18+ on the Autism Spectrum and their relatives

Process – to recruit 500 adults on the Spectrum and 500 relative/carers. Both groups will be asked from time to time to complete information about their life experiences

Question to answer – Can services be improved from better knowledge about this group?

Contact 0191 282 1380 or adultautismspectrum@ncl.ac.uk

Alzheimer’s Disease Genetics (Cardiff University)

Focus – identify the genes that contribute to susceptibility to Alzheimer’s

Purpose – improve understanding

Eligibility – must have late onset Alzheimer’s

Process – to recruit 1400 with late onset and 2000 controls and 500 carers and 200 controls

Question to answer – Can services be improved from better knowledge?

PPiP – (Prevalence of Pathogens in Psychosis)

Focus – to measure the presence of antibody mediated encephalitis (AME) in the blood

Purpose – if found to be present indicates immunotherapy rather than MH treatment

Eligibility – between 18 – 70 and must be recently less than 2 years diagnosed psychosis

Process – interviews with and blood samples taken from participants

Question to answer – Can services be improved from better knowledge?

DPIM – (DNA Polymorphisms in Mental Illness) UCL

Focus –to gather genetic information from people with Bipolar disorder or Schizophrenia

Purpose – to be able to deliver more personalised treatments to this group

Eligibility – aged 18 + from an English, Scottish, Welsh and Irish adult gene pool only

Process – Blood samples, interviews and building of family trees

Question to answer – will improved insight to the role of specific genes (more than one) result?

To get involved contact Karen on 010707 253836 Karen.Irvine@hpft.nhs.uk

4. Our Website

Terry reported that no meaningful feedback had been received from members to date but there is still a need for comments. In the meantime, some updates plus the inclusion of the October minutes have been made. Unfortunately, following this updating, Terry had managed to lose the earlier link to the site. While this is being restored, we can still access the site by using the more specific link. http://caringforcarersindacorum.com/Main Page.htm

During discussion the purpose of the website was re-iterated ie it is still meant to help both attract new and maintain existing carer members who might need help.

Unfortunately, our site is not yet recognised by search engines such as Google. It is likely that Brian and Terry will be able to put this right shortly. When this works as intended, people other than existing members will be able to access the site. However, we still need to interest them sufficiently for them to want to join and attend meetings.

Thus far, the site tells visitors more about the MH services and organisations available and how to access them rather than what it is like to be a member of a carer group. We need to describe, in some positive way, what it’s like to be a member attending meetings and what benefits might be had. To address this, members were asked to consider having a go at writing a review or personal testimony (anonymous) and submit it for possible inclusion to the site at some later date.

An additional benefit of attending meetings must be to hear about the latest developments in the MH field. This we hope is provided by our speakers making our choice and their relevance very important to our attractiveness. Signalling upcoming speakers on the website before, they happen was seen as a another suggestion for improvement.

Terry reported that we have yet to investigate how we go about providing a “members forum” by that we mean it is only available to members. One possibility is to set up a Google Group. Brian is to obtain an email address from our site’s host “Godaddy” which will help with both this and to allow us to receive the contact details of potential new members.

In conclusion, he stated that all suggestions for improvement of the site to help it attract new members would be gratefully received

5. Coproduction Board

Their next meeting is on 17th November. Terry will be substituting for Dick who will be in Palermo with Hazel and cannot make it. The main subject of discussion is to be Transport for the County. Terry confessed to knowing very little about this topic and asked the group if they had any suggestions for him to bring up at the meeting.

It was confirmed by Rod that free transport to Kingfisher Court from several railway stations in the county ( Hemel, Watford, St Albans, Radlett, Stevenage) could still be arranged by individuals. They should telephone 01727 897484 transport@hpft.nhs.uk.

Reinstatement of the interlink bus between hospitals in the county might also be a point worth mentioning.

6. Any Other Business

The Christmas meal starts 7:30pm on the 8th December at the Young Pretender Kings Langley. Dick reported that he had booked 22 places with a £5 per place deposit. He explained that we could choose either a two course or three course meals. These to be subsidised from group funds and would be £5 and £8 respectively – to be paid on the night. As part of the deal, the venue will provide a free bottle of wine for each 5 people dining.

Member selections from the menu were completed by those in attendance and Dick will be posting off a copy of the menu, to those not in attendance, for their selection.

Dick also reported on his expected changes to the speakers and meeting dates as :

8th December – Christmas Dinner evening – no speaker but several guests

12th January – Tim Napper a CCG Commissioner (main funders of NHS in Herts)

2nd February – James Holland + Sarah Williams update

2nd March – Chris Lawrence Chair of HPFT (plus possible AGM)

6th April – The Bed Manager for Kingfisher Court (yet to contact)

There was some further discussion about questions the group might come up with for Tim Napper in January. Dianne reported on the further reduction of support resources available from Turning Point which could be one question for him. The group was asked to come up with some more before the January event. The CCG published priorities might be a source of questioning worth exploring. The January meeting is expected to comprise – Tim Napper’s presentation for up to 90 mins followed by some New Year nibbles. Because of this it was stressed that we should start the meeting a little earlier than normal ie between 7:30 -7:45pm

Rod reminded the group of several upcoming meetings we could attend:

17 November Carers in Herts Forum on Dual Diagnosis at Oxlease House, Travellers Lane, Hatfield starting with a sandwich lunch 12:30 for 1 – 3 pm

21 November HPFT Carers evening 5:30 – 9pm at 99 Waverly Road, St Albans

29 November Carers in Herts on Eating Disorder at Oxlease House, Travellers Lane, Hatfield starting 10:30 – 12:30 pm followed by a sandwich lunch

NB. Carers in Herts can help with travel arrangements and alternative care costs to enable you to attend. Please contact them to discuss. 01992 58 69 69 or contact@carersinherts.org.uk

Terry reported that he had listed and attached our “paper based library resource” (handed back from Helen) and asked the group what they wanted to do with it now. The point was made that some of the fact sheet materials are very old and updated information could now be gained on-line from same organisations. However, some of the books, though few, could still be useful. Moreover, it was suggested that members might have some relevant books they would wish to donate to the library and or would wish to recommend that we obtain. Members agreed to think about this and get back.

7. Date of next meeting – 8th December 2016 for our Christmas Meal