Parent

I am writing to give you a reference for Sophia Vieira and the Eating Disorders Home Care Service she runs.

 

The EDHC team has been caring for my daughter, for over a year now. Sophia has managed to set something up which is very special. My daughter has struggled with an eating disorder for 13 years and has been in and out of inpatient units – Sophia has provided my daughter with special support that has been personalised to enable her to be able to live at home without any admissions since last June. She employs excellent people who she trains. I know she has good supervision and support in place. Her team has built a special rapport with my daughter. They have been completely reliable and can also mix the model of direct care with digital support which to be honest I was slightly cynical about but which has been great.

The team treat my daughter as an adult and are just wonderful.

 

I cannot highly recommend them enough.

Patient (26 years old)

My name is k and I’m one of Sophia’s patients. I would like to tell you that Sophia and her team have helped me a lot to stay well, they have worked extremely hard to keep me out of hospital for over 1 year now, which is the longest time I have ever spent out of hospital in the last 15 years, that I have had anorexia for. I am in the strongest and best place I have ever been since I got anorexia. My weight is healthy but I wouldn’t have been able to manage without Sophia and her team, if I didn’t have their help, I would definitely be in hospital. I found that having careers in the community is much more helpful and you have no one else to compare with, so it really helps my recovery, compared to being a patient in a hospital. Sophia and her carers are very experienced, they really understand eating disorders and have worked in other eating disorder units, so they really understand me and know how to support me very well. I wouldn’t have been able to stay well without them, I have a very strong illness and my doctor would say I am very challenged from hospital experiences, the carers have changed my life and I really want to get better and recover now.

Parent

Sophia started working with my daughter   in February 2020 as part of the discharge plan for A to move home after a 14 month stay at an in-patient eating disorder unit. A was discharged home on 27th March 2020, just prior to her 18th birthday and straight into the first lock-down. Her diagnosis included Arfid, ADD, emerging Personality Disorder and Atypical Anorexia. During her stay at an ED hospital her diet consisted of Ensure six times a day and bottled water, both of which she drank orally. She occasionally ate wrapped ‘safe’ snacks like crisps or biscuits. On admission she was fed by NG tube and she refused to eat or drink at that point. Her issues stem from a fear of contamination which she believed could lead to anaphylaxis linked to her tree nut allergy.

 

In the two years prior to this admission, my daughter had two other in-patient admissions to CAHMS psychiatric units in addition to multiple admissions to the Paediatric Ward, all related to her refusal/inability to eat or drink.

 

Sophia worked with my daughter supporting her with her eating daily 7 days a week until February 2021 when we reduced it to 5 days and currently works with her 3- 4 days each week. Sophia also speaks with us for half an hour each week to review progress and address any concerns. Over this period, she has managed the following:

  • Use her own set of cutlery for meals at home and moved on to using cutlery in ‘safe’

  • restaurants and food outlets

  • Use her own plate and bowl at home and is starting to eat off plates from trusted

  • restaurants and food outlets

  • Use her own mug to make and drink hot chocolate

  • Eat food with her hands, at first using disposable gloves but now without eg burgers, chips

  • and sandwiches

  • Drink hot chocolate in a disposable cup from safe food outlets

  • Incorporate a range of breakfast cereals, including porridge and Weetabix into her diet

  • Incorporate a range of pre-prepared meals into her diet including: macaroni cheese; fish,

  • chips & peas; tomato basil pasta; quorn lasagne; and tomato soup

  • Eat a portion of mixed steamed vegetables with her supper

  • Eat strawberries and is working on introducing other fruits

  • Cook some meals for herself e.g. pasta and sauce, boiled eggs, sandwiches, toast

  • Prepare and eat meals comprising different elements eg schnitzel, chips and peas

 

Over the last year, Sophia and my daughter have worked hard and well together and developed an excellent working relationship. Their work has included producing a list of achievable goals in 6-8 week plans. This has proved very successful and most recently, for her 19th birthday, A was able to enjoy her birthday by sharing cake with the family and drinking a cocktail at a restaurant.

 

Sophia has worked very hard with my daughter and there have certainly been some challenging times during the year. Support from Adult Mental Health Services has been rather lacking in provision and understanding of her needs. I honestly do not know how we could have got through this year, never mind making incredible progress with my daughter, without Sophia’s support, guidance and expertise.

Parent

My daughter has been suffering with Anorexia since Spring 2018. She has had 4 admissions and there was no light at the end of the tunnel.

 

My daughter heard about EDHC on her last admission as a friend from her former admission was still managing at home with the care of this team. Online supported meals by specialist ED nurses sounded a 'long shot' but we were desperate to break the cycle  and we had nothing to lose.

 

Sophia recommended she started to support my daughters eating whilst still in hospital, to build trust. So it started with a snack on the ward.

 

My daughter was now coming home. She had been medically stabilised, re-fed to the bottom of her healthy weight range. She was physically well enough to come home but was still very much struggling mentally.

 

This time though, my daughter returned home with a hand firmly held by this team. Sophia supports my daughter with a team of 6 other nurses and hand picks nurses with great care for each patient.

 

It turns out that this was so much more than online supported meals, it is therapy too.

 

Crucially the relationship between my daughter and the team quickly built. Not only do the nurses deliver meal support but they are all skilled in mentoring and motivating the patient. The team are very experienced and they impart much wisdom throughout the meals. 

 

My daughter understands the efforts of her team and finds that motivating in itself. She knows this team goes above and beyond to support and she responds very well to that.

 

In the darkest of days as my daughter fights this illness at home, the team tirelessly supports her to claw her way back on track with her eating.

 

As my daughters carer, it has given me peace of mind while I am the sole carer for her at home.  It is so frightening as a parent when their young person transitions home from hospital when suffering from a severe eating disorder.

 

Currently the services to support that transition are very limited so finding EDHC has been a game changer for my daughter and the whole family too.

 

There are only 6 dietician sessions offered by the community team after discharge so my daughter moved to the care of the EDHC dietician. This has been very key as she has needed intensive ongoing dietetic support.

 

The EDHC team works with their dietician as a tight unit to constantly steer my daughter to safer ground and motivate her to be so much more than a sufferer of AN.

 

EDHC is constantly evolving ways to help her to work towards independence and freedom from her ED. 7 months home and she is still on the meal plan which is a miracle in itself. 

 

Just because a person is sent home from hospital does not mean that they are 'ready' for recovery. Ambivalence to recovery is one of the most challenging elements of beating this illness.

 

Sophia's team supports the child/adult to work towards their recovery in their own home at their pace, they understand the challenges of every bite. To find a service that can disrupt the cycle of 'hospital, home, relapse' has been of such enormous magnitude to our family.

 

This spares the sufferer (and their family) the agony of relapse: their health declining over weeks or months, only for them to be taken out of their homes to an alien hospital environment.

 

With the crisis in beds in EDUs post covid and AN patients being left on general wards for weeks only to be sent home still chronically ill... never has this service from EDHC been more vital.

 

I am hopeful that everyone that needs this service upon discharge from hospital for their eating, should be able to access it.

 

It has been life changing for my daughter and everyone who loves her.

Testimonials

Recent feedback from some of our patients and their parents