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Parent - CCG FUNDED

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.

Service user

I worked with Gabi from January to May 2021. Having gone to university and struggling with the pandemic, I began to develop habits that put me at risk of developing an eating disorder. With Gabi I discussed the practical side of dealing with this: what foods were healthy, easy to make and would encourage my appetite back. But we also discussed the roots of my habits: we figured out that my low moods would often exacerbate the problem and we worked to find ways of dealing with that as well. It was a difficult process in a difficult time, but my sessions with Gabi were clear and encouraging and helped me face the problem as well as giving me a firm foundation to steer me towards getting better.

Parent

Gabi came to us with a high recommendation from the psychiatrist who was treating my 17-year-old daughter for depression and very low body weight after a period of illness. We found Gabi to be very personable and helpful. She was patient and explored different ways to engage with my daughter.  She gave useful suggestions and menus for us to try. Gabi really connected well with my daughter at a very difficult time in our lives and we will continue to seek her advice and support in the future. We are very pleased to recommend her and thank her for all her support. 

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 - Private Patient

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.

Parent

My daughter M saw Gabi for about 6 months after receiving a diagnosis of anorexia at the age of 17. She is now nearly 19, recovered, and prospering at Cambridge University, in no small part thanks to Gabby’s skill, experience and dedication.

 

Gabi combines her undoubted expertise with genuine empathy and an ability to go where ever the session takes her - they are always patient-led and she is never thrown by the unexpected. She has been a highly-valued and beneficial addition to this very intense period of M's life, and I would highly recommend her to anyone who finds themselves in a similar position to us.

Service User

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

Gabi and her team were recommended to me when my daughter was unable to get her anorexia back under control following a bereavement. Gabi struck a great balance between empathy, listening, challenging and problem solving in order to give my daughter techniques to eat more easily. She worked hard to understand the underlying causes and triggers which is tough to do when a teenager does not like to talk and engaged different members of her team when we needed them. My daughter made good progress with Gabi and Sarah and I remain grateful for their support and advice.

Parent

My daughter and I have known Gabi from almost the beginning of this Ed journey. We have had a rollercoaster ride through various admissions- Ed and medical.

Gabi has been our rock throughout this journey. She is very intuitive and my daughter trusted her. This is no mean feat as my daughter had not liked any of the dieticians before. 

Gabi devised treatment plans according to my daughter’s needs at every stage. She supported my daughter not just through meal plans but also psychologically. She understood her without any judgement and stood by her against other clinicians who misunderstood my daughter’s physical symptoms. We all know how all physical illnesses are often put down to mental health if your child has an eating disorder. This was not the case with Gabi. She fought my daughter’s corner when I wasn’t present. 

I feel Gabi is the one who has got my daughter to where she is now, which is eating intuitively, living a normal happy teenage life. My daughter had been on tube feed for several years and had refused anything orally. So to go from that to eating intuitively is phenomenal. Gabi managed to get her to eat, challenge numerous fear foods, talk her through intuitive eating, shopping and cooking for herself so that she could manage at university.

I will forever be grateful to Gabi for helping my daughter and us get our lives back. She is our Godsend.

We honestly cannot rate the EDHC team highly enough. The support that our daughter and us as a family has received has without a doubt enabled her to stay at home and avoid becoming an inpatient. It has enabled her to get some quality of life back, go on holiday or out for a walk and still have access to her support team.  My husband and I have been able to continue to work, not only essential financially but also for our own mental health.  It has enabled us to start to repair our relationship with her as we are not having to make her food, sit with her and help support and manage it which causes a lot of upset.  The team at EDHC have always been so professional and I think the boundaries they always set with her have been a vital part of their relationship.  They are so knowledgeable and have spent a lot of time and effort developing therapeutic relationships with her and ourselves which has aded her to make positive progress.  At times when both my husband and I have have been left completely broken, they have been there to support us and offer advice and time to listen which I do not think we would have managed without.  How flexible their service is has allowed her to even consider holidays and returning to some work, they plan with her how they can best support her which has meant she feels secure to try them and push through the super difficult times.  When she has been at her lowest and darkest places she has reached out to them for support which then enabled us to act and seek emergency treatment which I am sure has avoided serious attempts on her life.  I simply cannot say how thankful we are to the EDHC team and so great full that we were fortunate enough to access their service through the NHS.

Family Member 2023

NHS funded Service User

It was tricky to start with EDHC (as most things are!) and I was a little nervous about it. It felt like quite a big jump from having full free reign of my behaviours to having some accountability to eat regularly. That said, I have felt really supported the whole way through. The team were lovely and understanding of the difficult transition and keen to offer support to make it more manageable and comfortable.  

My meal support team have been amazing and the most helpful thing is that they have been so supportive of everything I have brought to calls. They have helped me through meal plan increases, difficult/stressful events etc. I know that I can talk to them and be honest about what I am experiencing and that they will be understanding, try to help as much as possible but also still hold me accountable and not allow me to fall into unhelpful coping mechanisms.  

Testimonials

Recent feedback from some of our patients, parents and family members.

Service user funded by the NHS
2022/2023

Sophia always contacted me before and kept me involved with making plans for any changes to my care and allowed me to voice how I would find it best to be done so that it was as smooth as possible. It was always done in advance so I could prepare as necessary. 

 

They were always very supportive and gave me suitable coping skills when they saw I was struggling. They always challenged me and helped me make the right decision and allowed me to talk about anything. Their expertise in the field really helped me and allowed me to gain insight to how I was feeling and be able to articulate my thoughts.

Partner off a service user 2023

I am staggered at the progress *** has made. She is more relaxed, can pay attention to her adult, mature self and often can see the unhelpful role her restricted eating functioning has. She is prepared to have conversations about it. The staff have been wonderful and key to enabling her to do this. 

Service user from the NHS 2022/2023 

I cannot put into words how helpful I have found the EDHC in my recovery. I wouldn’t have been able to do it without them. I know it may not work for everyone but I was so glad that I was able to engage as it was a game changer. I really hope that everyone it is offered to gives it a good chance because it may just be the thing they need. Not only did they help me but they were amazing with my family too, constantly reassuring them and taking the role that they had where we would have fought about food. They challenged me instead of my parents and this helped the family relationship so much and again was a reason that I am where I am today. It is such a helpful service and I am so happy that others can be helped the way I was. They were always so supportive, even taking them to restaurants when eating different to my family and making my food with them was so helpful because I can now continue the habits when needed.

Service user funded by the NHS 2023.

Sophia, I just want to say thank you so incredibly much for being such an influential part of my recovery. I honestly know I would never be where I am today if it wasn't for you and you incredible team. Never ever doubt the difference you make to peoples lives, I know for a fact you have saved mine. i cannot begin to imagine the impact you can make in this world & will definitely be your No1 fan supporter forever. Thank you so much again!

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