May/June 2007
Casa Albert Project - Community Team update

Report prepared by Liz Bryan - Volunteer Project Development Coordinator, Hospice Care.


The Work.

After a delay of several months from the recruitment of the original members of the team, we received authorisation to provide nursing in the community. Although contacts with patients and professional groups had been made and some social support had been offered to some carers, until the nurses were authorised to operate, the team did not feel fully functional.

Obviously for such a new project, establishing a presence and reputation in the community is paramount. It is, however, important to take things slowly and steadily. It is clear that the need is immense and the team could very easily be overwhelmed. We want to provide a professional and high quality service which reflects our concern for the individual and whole person. Time has been spent therefore developing a clear referral policy with criteria to guide doctors etc but also to assist the team to decide who requires specifically palliative support.

Lilly's Story


(consent was obtained to use this photograph)

Lilly (not her real name to protect confidentiality) is a 13 year old girl with an advanced brain tumour. Her parents are unemployed and have no money for basic necessities let alone for medications, incontinence aids or transport to hospital outpatients for further chemotherapy. Lilly has lost her speech and the use of her right side, is doubly incontinent and is so nauseated that she cannot sit up.

Dr Adina and Mihaela (community nurse, Team Leader) visited Lilly at home and assessed her symptoms. Adina prescribed steroids to reduce the swelling in Lilly's brain. This is only available as an injection in Romania and at first Lilly screamed and refused to let Mihaela inject her. Mihaela respected Lilly's wishes and instead of forcing the treatment on her, sat and played and spoke gently to her. The next day Mihaela brought a toy mouse to visit with her. After several minutes of relaxed play, she gently mentioned again the injection and explained why she and Dr Adina felt it might help Lilly to feel a bit better. Lilly spontaneously rolled over onto her right side and exposed her hip communicating her consent to receive the injection. After several days of high dose steroid treatment Lilly stopped vomiting and was able to change her position.

Healthy children need to be encouraged to wash and clean their teeth but skin and oral hygiene are even more important for those with chronic and life-limiting conditions, if mouth infections and pressure sores are to be prevented. Lilly's family would not have the means to provide the number of incontinence pads needed to provide sufficient changes to protect her skin from excoriation nor did they see the purchase of a toothbrush and toothpaste as a priority. These basic items were provided along with education from the nursing team about how to keep Lilly clean and comfortable.

Domestic issues were further complicating Lilly's overall care and the capacity of her family to cope. Ramona, our social worker, became involved and was able to advise and support Lilly's mother to get her legal papers in order so that she could apply for the benefits she is entitled to. Ramona is also able to work with the nursing team to provide emotional and spiritual support for the family as they prepare them for Lilly's physical deterioration.

Sadly, Lilly died at the beginning of June. The Casa Albert team's care and support enabled her family to manage her death at home. The team has continued to provide bereavement support and the family are grateful for the quality time that they had with their daughter in her last weeks of life.


The Team
 
Mihaela
Nurse Team Leader
Lidia
PR & Fundraising
Adina (PT)
Doctor
Ramona
Social Worker
Raluca
Community Nurse
 






Adrian
Administrative Assistant
Adela
Community Nurse
Carmen (PT)
Paediatrician
   

It was with great sadness that we heard of Adrian Cretu's decision in January to return to teaching. He had been our original recruit to the post of Administrator and despite a short term of employment his contribution is very much appreciated. We were delighted that before Adrian moved on we were awarded authorisation to deliver community nursing services. Adrian had lost sleep over this process!! He now takes the prestigious title of the first Casa Albert project's Romanian volunteer.

We have replaced Adrian Cretu with another Adrian. Adrian Hazur has a degree in economics and joined the team at the beginning of March. His quiet and calm efficiency is already much appreciated.

Adela is the third nurse to join the team. She is a true nursing enthusiast and rarely without a smile! At last we really feel we have our team of 'Albert Nurses'.

Dr Carmen Sova who works primarily at Bacau Hospital paediatric department now attends the team's weekly multidisciplinary meeting and provides her valuable expertise.


'Albert's' Angels (in contrast to 'Charlie's!) prepare to use their instruments. (Don't even begin to imagine what that white tube is for!)

Note that they are sporting the prototype Casa Albert nurse uniform of orange polo shirts and black trousers.

The darker shirts are now being embroidered with the new Association Lumina logo. They will also each have a grey sweatshirt for cooler days and a black waterproof coat.

The Resources.

The team are our primary resource. We have managed with God's guidance to recruit a wonderful bunch of relatively young people who are totally committed and excited about the care they are able to give to suffering children and young adults, thanks to the Casa Albert project.

Initial training and ongoing professional support is being managed by Liz Bryan, our palliative care professional advisor, who after seven months seconded to CITD from Macmillan Cancer Support has returned to volunteer status, working now at St Christopher's Hospice, South London. Liz is currently drawing together a team of UK palliative care professionals to assist her with the support and ongoing development of this project.

Cry In The Dark's aim is for the Casa Albert project to become independently sustainable within five to ten years. To this end the team, as well as providing essential hands on care, are representing the project with local state health and social care providers and businesses and nationally at appropriate conferences and seminars.

March 2007- Lidia, Mihaela and Ramona prepare to present to a meeting in Bucharest of palliative care projects sponsored by Vodafone.
May 2007- Raluca presented the Casa Albert project to the Romanian National Association of Nurses in Timissoara.

Of course we cannot offer a community service without transport and the team now have two very much appreciated community cars, complete with the logo to promote local visibility for the work of Association Lumina, the umbrella organisation for both projects.



Hospice Casa Albert building is almost complete (see news archive entries below), and will provide essential premises for the extension and development of valuable day care, inpatient and education services but we have a way to go and will not be able to continue without support from our generous donors. To this end we have launched our Wish List Campaign

Meanwhile if anyone has any links with pharmaceutical or medical dressing manufacturers we would love to hear from you. Not only is there very little availability of medical resources in Romania, they are also disproportionately expensive and eat into our budget considerably.


Contact
Liz Bryan- lizbryan@cryinthedark.co.uk

Or
Liz De Graeve at the CITD office- liz.d@cryinthedark.co.uk

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