Research

I promised to discuss the new research project for which Nanda had to sign a consent form and hand in yesterday.

First of all, it does not involve new or extra bone marrow or blood samples. It just involves existing bone marrow samples taken during her first four weeks of treatment.

I haven´t seen the whole consent letter but my brother summarised for me “the scientific part”. To quote:

“The aim of the study is to measure the levels of angiogenesis, MDR-1, MRP and indicators of hypoxia in the bone marrow samples taken routinely at diagnosis. These measures would then be related to the speed and extent (the level if any of minimal residual disease) of your child's response to the first four weeks of treatment. This is to help further understanding of the variations in the speed and extent to which the leukemia cells disappear from the bone marrow during the first four weeks of treatment. In many adult cancers the numbers of new blood cells (angiogenesis) and a low level of oxygen within the cancer (hypoxia) are recognised as making the tumours less responsive to treatment. It is not yet known whether the numbers of new blood vessels or low oxygen levels are important for making the treatment of childhood ALL more difficult. Also some cancers contain resistance proteins (MDR-1 and MRP) that may reduce the effectiveness of drugs such as vincristine.”

As I haven´t seen the whole consent document, I am not sure of the rest of its contents.

I am sure this consent letter has not been translated into the principal minority languages of England – Urdu, Punjabi etc – the principle ethnic minority languages of he hospital´s catchment area - let alone Nanda´s native language, an official language of the European Union. I am afraid that ethnic minorities, or many others with little literacy (whether UK or non-UK readers, writers, listeners or speakers of English) and those who don´t have a first idea about the science, are left in the dark.

GPs vindicated?

The Department of Health has just published the results two surveys into patient views of General Practitioners (GP, or family doctor to our non-U.K. readers) in England.

There has been much political diatribe over the last few months that, since the government gave the GPs a new contract and, (supposedly I will say, as I have not seen statistics on this), they are earning more money, working less irregular hours and the government actually wants them to work more hours and more irregular hours (early mornings, evenings and weekends).

But as the GPs are meeting the targets of their new contracts (set by the government), they don´t see why they should. It seems to me the government did not set its targets effectively.

Anyway, the patients´ surveys (commissioned by our last Health Secretary, Ms Hewitt) are generally favourable to the GPs.

84% of patients are content with their GPs opening hours. That leaves 16% who are not – perhaps that 16% needs to be analysed as to occupation, working hours etc. If, for example, they were found to be more mobile (transportation etc), they could be offered an alternative GP practice with more flexible working hours (generally larger) but presumably at the cost of transportation.

In some areas some patients were dissatisfied with access times – small rural practices, with a widely-spread geographical base, understandably do have more difficulty in this.

Making an advance (48 hours or more) booking, more important, the further away you are from your GP, was considered a problem.

Rural GPs also had more difficulty in discussing choices of secondary referrals for treatment at hospitals. This is, I feel, mostly a problem of information infrastructure in the NHS whereby small isolated GPs are not provided with adequate information about choices, or do not have the time to process this information and, of course, patient transportation problems.

“Deprived” areas suffer similar problems.

Ethnic minorities are less satisfied than the white indigenous British population. I am not surprised – I think you would find this throughout the NHS from hospitals to doctors to nurses to porters to cleaners to patients. We have posted on NHS, hospital and GP access to interpreting and translation services here and here.

Cultural services for the patients in the NHS are not sensitive (and I am not saying they should or should not be) – on our ward, for the first four weeks that we lived there, we had an “orthodox” Jew (skull-cap and tresses), next to a “fundamental” Pakistani-origin Muslim (salwar kameez and hijab), next to a Pakistani (salwar kameez only) Roman Catholic Christian, next to a white British National Party (i.e. fascist/racist) voter … next to Nanda, black African, nominally Roman Catholic Christian. The prayer room at the hospital does not discriminate.

But the NHS must provide the linguistic services … according to the BBC report our new Health Secretary, Alan Johnson, highlighted ethnic discrepancies as something which needed investigating.

Is this a small change from Ms Kelly´s opinion that all NHS patients, who are not in A&E, should speak English?

Our Council Fights Back

Since the application for judicial review of the cutting A & E services at our local hospital was rejected on 8 June (posted here), I have learned some more - the SHA is also planning to cut both paediatric and maternity services.

So, on that Sunday a year ago, Kezia would have had neither A & E nor Paediatric!

(Blimey John, we would have had a Nurse Specialist diagnosing her with malaria based on arriving from Africa, on an enlarged spleen, no malaria test available on a Sunday, not believing African doctors and come back tomorrow).

The local council is fighting back!

I know it is politically expedient for local councillors and MPs to focus on local issues, rather than think of the good of a wider region but I think they may have a point in this case.

The council commissioned a report from a health policy expert at the De Montfort University in Leicester to examine the SHA’s Making it Better: Making it Real (Paediatric and Maternity provision) and Healthy Futures (A & E provision) reviews and to evaluate its decisions to downgrade (or should I say degrade?) services provided by our local hospital. And, obviously, since her paymasters were the local council, she gave them what they wanted to hear.

This document has been presented to the DoH’s Independent Reconfiguration Panel (IRP), reporting to the Health Secretary, by 26 June. The IRP is basically the last line of defense before our Health Secretary makes critical decisions about changes to the National Health Service.

I am wading through the expert’s report … and will certainly post more on it.

But just some quick observations …

In our post on Monday about translation/interpreting services, our SHA (which I noted was positive about the necessity of good translation (sic) provision) highlighted the problems that non-native speakers of English (either for cultural and/or linguistic reasons) might have accessing local public transport systems and that access to familiar local hospitals improved access rates.

We live in a borough with a high proportion of ethnic minorities.

The SHA has paid lip service to the impediments faced by ethnic minorities travelling on public transport. The SHA’s transportation data is based only on ambulance times between hospitals, not on public transport availability and times – so in-patients who do not need ambulance transport and visitors without private transport (33.4% for our local authority according to the 2001 census, above both the national and SHA’s average) have not been taken into account.

I remember very well taking 2 ½ hours one way to travel by public transport the 14 miles from the RMCH to our future home – a bus journey from the hospital to the centre of Manchester, a 20 minute walk from Piccadilly to Manchester Victoria railway station, a half-hour wait at Victoria, a half-hour rail journey, wait for a bus from the destination railway station to the town centre, another bus journey to our future home. And return. Five hours total … and that was with no treatment involved.

Two children in tow, one with leukaemia, not speaking English …

Even now, Nanda is not confident enough to catch a train into Manchester … but, hey, she is confident enough to administer chemotherapy and deal with the RMCH! Good on her!

Clearly, the transport times involved are not as lengthy between us and the RMCH and Lucia and the RMCH. On occasion, when Lucia has needed emergency admission during her treatment for ALL, the always-consulted RMCH has allowed her to be treated at her local Blackpool general hospital. I don’t know the facilities at this hospital compared to our own local hospital, but I’m sure she received adequate treatment and I imagine our local hospital would as well … but I imagine the RMCH makes decisions about distance, time, transport/ambulance availability, clinical need and, I hope, ethnic minority needs (language, availability of Languageline at night etc … do they follow a protocol or does the duty doctor, or even the on-duty nurse make a judgement?).

Yet the SHA recommends cutting services at the local hospital, obliging both native and non-native speakers of English to travel further afield on ropey public transport systems to seek essential healthcare.

The government claims to be increasing patient choice, yet it is cutting services at our local hospital. Limiting choice.

Thank you to our local hospital for having A & E and paediatric services. Thank you to my brother for not being part of the 33.4% - I cannot imagine travelling 14 miles on public transport on a Sunday after 36 hours travel time with my leukaemic daughter – and thank you NHS/RMCH, in spite of everything you are up against, for all you are doing for us!

Patricia Hewitt and Ruth Kelly – up yours!

Making it Better - Translation Services

Although our local council is not impressed with the Strategic Health Authority's proposals under the government's Healthy Futures and Making it Better "reform" programmes (of which more anon), there is no mistaking the SHA's commitment to translation services ...

"Inadequate translation services were seen as a major barrier to accessing services for those who could not speak English. It has been found that in addition to the importance of translation services, BME communities may also experience communication barriers which reduce access to services due to travelling, e.g., if spoken English is a barrier to using public transport, where this is the main travel mode. Where communication is a challenge, service users prefer local services, trusting the more familiar than the unknown, particularly when increased distance presents a greater barrier to access for family and visitors, by virtue of cost, time, childcare arrangements etc."

"Communication difficulties have been recognised in the MiB consultation as being of major relevance for some groups, e.g., people with poor literacy and non-English speakers."

For Black Ethnic Minority Groups "Ensure that translation and interpretation services are readily available as a matter of routine."

So stick that up your Ms Kelly!

NHS Translation Services II

Back in March I posted on how invaluable translation services are to both patients and staff in the NHS.

Dr Crippen warns us that Ruth Kelly may become the new Health Secretary.

She is already making clear her views on translation services provided by the state (and see the interview here) - it appears that she feels they should only be available to A & E departments. Otherwise it is a discouragement to learn English!

As stated above it is not only the patients who benefit, its the doctors and nurses - if a patient cannot communicate what s/he is feeling, what medicine s/he is taking etc, then the chances of mis-diagnosis, wrong treatments increase enormously. And then we patients will sue when something goes wrong, what's the doctor's defence? The patient doesn't speak English so it's not my fault!

Heaven forbid she becomes Health Secretary!

NHS Translation Services

I am grateful to Hospital Phoenix in the comments section of NHS Blog Doctor's latest post (on the proposal for doctors to be able to prescribe "social services" presumably without extra funding) for pointing me to these articles in February 24's British Medical Journal arguing for and against cuts to interpreting and translation services in the National Health Service. (And here and here are the comments).

These were in turn inspired by a BBC report here estimating the costs of such services.

In the BMJ article arguing for cuts in NHS interpreting/translating services GP Kate Adams suggests that doctors should be able to "prescribe" English classes andd to quote "when the NHS is facing a huge financial crisis, is it in anyone's interest to see the costs of translation services increasing?". Oh ... so interpreters should accept less pay, or English teachers are cheaper than interpreters?

I am appalled!

Read the articles yourself - here I will confine myself to why such services are so valuable to ourselves and why any proposed cuts would harm our daughter Kezia.

Kezia will be three years old next month. She is learning both the language of her birth place and English but is hardly proficient to articulate how she feels to medical staff in whatever language. Her mother, Nanda, does not speak English and is not British. Kezia is British because I am. Nanda needs to articulate for Kezia. Nanda does not really want to be in the U.K. but we both want Kezia to be better so we are reluctantly a separated family but from where I am writing she would be dead by now.

The NHS has provided Nanda with interpreting services when Kezia has to go to hospital. And the excellent Language Line telephone interpreting services are available if there is an emergency in the middle of the night. If such services were not available, Nanda would not know what to do, would not be able to call the hospital, call for an ambulance etc and this could potentially be fatal for Kezia.

Nanda has now declined interpreting services for regular hospital visits as she now feels she knows the routines well and, more often than not, understands what is required medically much better than an interpreter who is unfamiliar with chemotherapy, Hickman lines, lumber punctures etc. Being told what you already know can feel a bit patronising. But we are both comforted to know the services are available if required.

But Kate Adams would prescribe English classes for Nanda. I'm not sure how she would organise them. Two or three visits to the hospital each week, on different days, at different times, looking after Kezia at home, picking Jaime up from school, shopping, housework ... Kate, will the NHS pay for a childminder for Kezia whilst Nanda has her English classes? Will the NHS chaperone Kezia to hospital whilst Nanda has her English classes?

The General Medical Council states "To communicate effectively you must make sure, wherever practical, that arrangements are made to meet patients' language and communication needs".

I'll raise a glass to that!

(Here's an interesting link to the Poseidon Trial which "is a research study designed to see whether people who go to story-sharing groups in their own language led by a bilingual health advocate, get better control of their diabetes and make other health improvements, compared to people who have standard education sessions led by nurses").