How the Phoenix Group began...

The Phoenix group is a support group for people who have been diagnosed as having dementia, and for people who are looking after someone who has been diagnosed with dementia.

The story so far..
In January 2004, the Day Hospital was running a Post Diagnosis Group that took place every Tuesday morning. This group was aimed at providing patients and their carers with information on their dementia together with the support and financial help they may be able to obtain. The Group met every six weeks and provided a much needed and valuable service. Over time it became apparent that providing information alone was not sufficient. I observed that group members were discussing issues among themselves that appeared to have not been considered by health professionals.

Group members went through experiences relating to dementia and dealt with these in different ways were prepared to share these in informal settings with other group members for mutual support and enhance the ability of the group members to deal with their condition. This was particularly noticeable among the younger members of the group.

The number of people being referred to the original group was were not satisfactory and I felt that, with so little participation while the potential demand could be very high, the day was not being used in the best way possible. On January 27th 2004 only one person turned up for the Group. This suggested that a different approach to providing post diagnosis support to those suffering from dementia and their carers was required. As mentioned earlier, on 27th January 2004 despite having sent out 5 invitations to the PDG only one gentleman attended the morning session. We had invited 4 people to the newly constituted Younger Persons with dementia Group on that afternoon, so I invited this gentleman to stay and attend new group. We were encouraged when the 4 people attended, but nothing could have prepared us for the meeting which followed. It was eye opening for staff and formed the foundation upon which the Phoenix group's ethos is based. We introduced ourselves and then told the group that this was to be their group and suggested that they run it how they felt would best benefit them. Within the group there were 3 patients and 2 carers'. We then sat back with an open mind, watched and were prepared to learn.

As the group talked among themselves it soon became apparent that the main thing these people really wanted was to feel confident while enjoying social interaction with like minded people who did not analyse and who (very importantly to all members of the group) were patients and carers with the same illness. As health professionals our challenge at this point was the use of the term 'Patient'. Every member of the group agreed that to them the recognition of their status as a patient was absolutely fundamental to their illness and to the care they received.

As discussion progressed the group acknowledged that funding would be an issue. They agreed to pay subscriptions and hold small raffles to raise funds. At this point I was a little concerned because of my formal role and my responsibilities as a nurse and being involved in taking money from patients and relatives. I suggested that it would be best if they managed their own financial affairs and consider opening a bank account which they controlled with two signatures and no Day Hospital staff are involvement. I felt it was this was important to make the group feel empowered and for them to have the ownership of the group. The group decided they wanted to give the group a name as they felt that this would give them their own identity and make a statement that this was partnership between the day hospital and those who were members of the group. Members were asked to suggest a name and to bring it back for consideration. Over the following few weeks the group grew and members brought new ideas. Dr. Beecham our Staff Grade Psychiatrist suggested the name of 'Phoenix' which the group loved and voted to adopt.

They opened their own bank account, registered with the North Warwickshire Council Voluntary Service (NWCVS) and devised their own constitution. The (NWCVS) was extremely helpful. Setting up a group such as the Phoenix was outside my normal nursing remit and definitely outside of my area of expertise: I needed the support of experts. I was pleasantly surprised to find that doors opened in all directions. It was great to find people willing to help: from (NWCVS) to Educational Services and local borough councillors. Warwickshire County Council gave the Phoenix a grant of £3000 to help towards the costs of setting it up in a suitable venue that remains true to the Phoenix ethos.

The Phoenix is currently able to obtain additional funding for running the group from the Coventry and Warwickshire Partnership Trust through the Day Hospital budget. The group felt that whilst they appreciated the great help they have received so far, this funding would not allow them to be true to the ethos on which the group was formed. The group felt that their independence would be best preserved if the Phoenix were able to raise funds and increase peoples' awareness of dementia, by organizing bigger fund raising events. To do this, however, it became clear that the Phoenix was required to register as a charity. This is something that they were keen to do for themselves. Many people have already approached Phoenix with offers of support through donations. As one of the founder members and the level of my involvement I was asked to help them with this. However this was not my area of expertise and I looked for help from others. I can honestly say that the support of colleagues has been invaluable with fantastic and unexpected benefits for the group. When I approached colleagues from the Trust they were really excited about Phoenix and felt that the group was would help to develop 'Expert Patients and carers' and will also create an informal network of support for patients and carers in the local communities . This encouraged me to continue my work with the group to further develop it with active participation from members.

Time has gone on, it has been fantastic for the staff to watch the amount of support all the members receive, especially when a member experiences a crisis. Phoenix members have supported each other with offers of transport, cooking and helping in any way they can. We are positive that the support network within the group has made situations a lot easier to manage.

If you are interested in joining the Phoenix Group then please contact us and we will tell you how to join. You can use the form at the bottom of this page to email or or to make a request for us to call you back.

You can send us messages by simply filling in the form at the bottom of each page and we welcome your suggestions for the Phoenix Group and this site and welcome your feedback on the new site.

Contact Us

You can send us a message by simply filling in the form at the bottom of any page on our website:

www.phoenixforyou.org.uk

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