Category: Visits to LSD Centres

I visited several hospitals in Kolkata on 19th October. This was something I had always wanted to do, but the opportunity had never presented itself. I’m very grateful to Dr Dipanjana Dutta, Genetic Counsellor at the Institute of Child Health, and State Coordinator for the Organization of Rare Diseases India (ORDI), for organising my visits to the centres. Although my visit was in an independent capacity, not sponsored by ORDI, Dipanjana gave unstintingly of her time.

As with much of India, healthcare in West Bengal features a universal healthcare system, run by the state and central governments. The Ministry of Health & Family Welfare of the Government of West Bengal is responsible for administering and funding the public hospital system in the state. The entire state population is covered by a health insurance, either provided by their employer or the Employees’ State Insurance (ESI) scheme. Other categories of people (low-income, self-employed, the unemployed or the retired etc.) are covered under the state’s public health insurance scheme (Swasthya Sathi).

We first visited the Institute of Child Health, the premier children’s hospital in Kolkata and the first of its kind in India (https://www.ichcalcutta.org/). We met Dr Apurba Ghosh, the Director of the Institute and the doyen of paediatrics in Bengal. Dipanjana took me around the hospital, and we then went to the lecture theatre where I gave a talk on the clinical management of mucopolysaccharidoses.

From the ICH we went to the Institute of Fetal Medicine (https://ifmkolkata.co.in/), where we met Dr Kushagradhi Ghosh, Consultant in Fetal Medicine. Dr Ghosh has a well-established setup in a purpose-built building that is ideal for a multidisciplinary team or clinic. It would be very suitable for an LSD MDT clinic. Dr Ghosh was very receptive to the idea and certainly this is something that should be pursued.

Our last stop was at Apollo Hospital, were we met Dr, Anjan Bhattacharya, a developmental paediatrician, and his colleague, Dr Tamal Laha. Dr Bhattcharya has established a service for children with autism and cerebral palsy over the last 15 years. He heads a multidisciplinary team of physiotherapists, occupational therapist and speech and language therapists, and vision therapists. Every child who is referred is carefully assessed over a period of 7-10 days, at the end of which a comprehensive report is produced for the parents. This is an outstanding model of a multidisciplinary team, and its principles can be applied to other areas, including of course LSDs. Dr Bhattacharya is planning to roll this out to other Apollo hospitals around the country.

Of the three hospitals we visited, the Institute of Child Health is run by a trust, and Apollo is of course private. However, both are covered by the Swasthya Sathi, so patients having this get free treatment. The Institute of Fetal Medicine is classified as a nursing home and is not covered.

Unfortunately I was unable to visit any of the government hospitals, such as the Institute of Postgraduate Medical Education and Research and SSKM Hospital, which has been designated as a Centre of Excellence under the  National Rare Diseases Policy. This was largely due to bad timing on my part; I had opted to visit during the Durga Pooja festival, and a lot of staff were on holiday. Hopefully I will get the chance to go back some time.

I was privileged to be part of this event, at the kind invitation of my friend and colleague Dr Sujatha Jagadeesh. The event was organised by the FCRF , and held at their new expanded facility at the VHS Hospital, Chennai. Support was provided by Sanofi Genzyme. The event was held over two days. The mornings were taken up with lectures on LSD’s. In the afternoon there was a teleclinic, in which the patient examination, description of physical findings and discussions, including discussions with parents, were all filmed and relayed audiovisually to the audience in the adjacent room. This allowed a large number of people to “sit in” and observe without upsetting or intimidating the families. The teleclinic was Dr Sujatha’s idea; so simple and yet so effective that one wonders why it is not done more often!!

I visited AIIMS New Delhi in May this year at the kind invitation of Prof Madhulika Kabra and Dr Neerja Gupta in the  Department of Genetics. As with  previous visits, this one consisted of clinics and lectures to the postgraduate and DM (Genetics) students. Here are some pictures with the staff and students

In addition, I was privileged to be involved with the MPS Day celebrations organised by the Lysosomal Storage Disorders Support Society (LSDSS) held on the 14th. The event included a highly successful multidisciplinary clinic. More information about this an(and pictures) can be found on the LSDSS Facebook page here. It also gave me the opportunity of catching up with my friends and colleages from the LSDSS, including Manjit Singh and Shashank Tyagi.

In November 2017 I was kindly invited to  SGPGI Lucknow by Prof Phadke, Head of the Department of Medical Genetics, to teach on the DM (Genetics) course. This was my second visit to SGPGI this year. This was a more intensive session than my previous visit, extending over a week, and consisting of several lectures and clinics. The lectures covered various aspects of LSD, from basic science to new treatments. While they were specifically designed for the benefit of the DM students, the lectures were attended by PhD students as well. It was also possible for the lectures to be telecast live to other centres, thanks to the excellent Telemedicine facilities available at SGPGI.

The clinic attendance was deliberately restricted to a few patients per day to allow for more time for teaching.

Overall this model (a short, intensive, course, focussing on one area) seemed to work quite well, with positive feedback.

Below are some pictures from my visit.

SGPGI Campus pictures

Families at Clinic

Teaching Sessions

“Everyone you will ever meet knows something you dont”.

I have been fortunate to have had the opportunity to travel to different countries, sometimes alone, sometimes with colleagues. I have met some remarkable people – clinicians, scientists, voluntary organisations, and above all, patients and their families. It has been a humbling experience to witness their courage, their hope, their struggles, and, more often than not, their successes.

I am also very grateful to colleagues who have given up their valuable time to accompany me on these visits; their presence has immeasurably enriched the experience.

In 2011 a group of us visited two centres in India, the Fetal Care Research Foundation in Chennai and the KEM Hospital in Mumbai, where Tanya and I were guests of Dr Mamta Muranjan, Additional Professor of Paediatrics. The group consisted of Tanya Collin-Histed (CEO, UK Gauchers Association), Dr Uma Ramaswami (Consultant Metabolic Paediatrician, Addenbrooke’s Hospital), Niamh Finnegan (LSD Clinical Nurse Specialist, GOSH), Christine Lavery (CEO, MPS Society), and Malcolm Johnson (Genzyme).

While I had been working with Dr Jagadeesh in Chennai for a number of years, it was the first time I had had the privilege of accompanying colleagues to her centre. It was also the first time I had visited KEM hospital. A detailed report is available in the UK Gauchers Association newsletter here.

Some pictures from the visit

Chennai

Mumbai

I have visited Jordan twice, in 2014 and in 2015. On both occasions I was a guest of Dr Mohammad Antaki, President of the Jordanian Gaucher Association, and conducted clinics with him for LSD patients.

In 2014, I travelled alone. In 2015, I travelled with Helen Whitehead, Patient and Family Support Worker at the UK Gauchers Association, and two type III Gaucher young adults, Irma Shah and Nadia Fattouki. Dr Antaki arranged for us to meet with officials from the Health Ministry to discuss ways and means of establishing specialist clinics for Gaucher Disease in Jordan. We also visited the private Aljazeera Hospital, where we were shown around by Dr Nader AL-Khalili, its executive director.

Some pictures from my visits

2014

2015

In January 2015, a group of us – Tanya Collin-Histed, Niamh Finnegan (LSD Clinical Nurse Specialist, GOSH) Alex Broomfield, consultant metabolic paediatrician, and Irma Shah, a young type III Gaucher adult, and myself visited Chennai and Delhi.

Our first stop was Chennai, where we were guests of Dr Sujatha Jagadeesh, the clinical geneticist at Mediscan, whom I have known and worked with for nearly 15 years! Sujatha runs the LSD service at the centre. She has built up a closely-knit team, many of whom have been associated with the service since its inception. The centre hold a multidisciplinary clinic every year on the 26th of January, India’s Republic Day. This enables more families to attend as it is a national holiday. The clinic is also attended by several specialists, ensuring that patients can be seen by all the necessary specialists at a single visit.

Pictures below

the Department of Medical Genetics the All India Institute of Medical Sciences, New Delhi, where we were guests of Dr Madhulika Kabra and Dr Neerja Gupta. They had organised a clinic and some lectures. A patient meeting was also organised in conjunction with the Lysosomal Storage Disorders Support Society (LSDSS) of India and its CEO, Mr Manjit Singh.

Pictures below

A group of us – Tanya Collin-Histed, CEO of the UK Gauchers Association, Irma Shah and Nadia Fattouki, two young adults with Gaucher type III, and myself – visited Taipei, Taiwan in August 2015. We were there at the invitation of Prof Paul Hwu, head of the Department of Genetics, and his colleagues at the National Taiwan University College of Medicine.

After a long flight, we spent a day recuperating! The next day we were invited to a day out with the families, organised by the Taiwan Foundation for Rare Disorders (TFRD). It was a unique opportunity to meet the families and share some of their experiences.

The following day we were taken to the University Hospital. We were shown around the department and attended the LSD clinic, where we met some of the families. This was followed by a lunch hosted by the TFRD.

Pictures below

Day out with the families

Clinic

This was my first visit to Pakistan. I was a guest of Prof Huma Arshad Cheema, Professor of Paediatric Gastroenterology at the Lahore Children’s Hospital. Clinics and lectures had been organised.

Professor Cheema has campaigned tirelessly for LSD patients and their families in Pakistan. It has been a privilege to have known and worked with her.

I was kept pretty busy, but Huma ensured that I also had a chance to see the beautiful historic city of Lahore, the cultural centre of the Punjab. I even manage a trip to Harappa, one of the centres of the Indus Valley Civilization.

Huma and her team were perfect hosts; their kindness, warmth and hospitality overwhelming. It was an unforgettable experience.

Some pictures from my visit

Hospital and clinic

Pictures of Lahore