Annex A: views on welfare of the child

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1 Annex A: views on welfare of the child Background A brief questionnaire was sent out to all clinics, inviting their opinions and patient feedback on the current welfare of the child guidance. The questionnaire was sent to every licensed clinic in the UK to be answered by one or more members of the clinical team (person responsible, counsellor, nurse, consultant). Included with the questionnaire was a flyer to be displayed in clinic waiting rooms, inviting responses from patients on their attitudes towards the welfare of the child assessment. We received responses from 45 clinical practitioners and three from patients. This paper summarises those responses. The clinic questionnaire and patient flyer The clinics were asked the following questions: 1. What problems do you regularly encounter when making welfare of the child assessment? 2. What feedback do you get from patients about welfare of the child assessments? 3. Do you think asking GPs for information is a useful approach to welfare of the child considerations? Do you get feedback from GPs about their views on this? 4. How often and why do you make further inquiries (apart from asking for information from the GP)? 5. How often do you refuse to treat a woman or couple on welfare of the child grounds? What would be a typical reason for refusing treatment? 6. Have patients ever appealed against the decision, what happened? 7. How would you like to see the HFEA guidance in this area changed? The patient flyer read as follows: The HFE Act 1990 requires clinics to take into account the welfare of any child who may be born as a result of fertility treatment. This is called welfare of the child assessment. As part of a policy review, the Human Fertilisation and Embryology Authority would like to hear from women or couples undergoing fertility treatments regarding the welfare of the child assessment. Currently, fertility clinics tend to write to the woman s or couple s GP to ask whether the GP has any reason to believe that any child resulting from the treatment might be at risk. The patient has to give permission for the fertility clinic to approach the GP. The clinic might also ask patients to fill in child welfare ELC (09-04) 04 - Annex A 1

2 forms or have a special interview with them. Do you think the current practice is satisfactory? What, if any, are your concerns? Can you think of a better system? Feedback from patients This section summarises the responses received from three patients. Two patients expressed concerns about the GP assessment and whether treatment would be recommended: Although we understand the logic behind the welfare of the child form that the clinic gives to patients to give to their GP, we have found the process quite unnerving. I remember worrying like hell about whether or not our GP would say yes, and if he didn t, on what basis his decision would be made. Patients also compared the welfare of the child assessment carried out with assisted reproduction to the situation where people conceive naturally: we always ended up asking ourselves how fair it was that those undergoing any kind of fertility treatment had to answer so many questions and fill out so many forms, when those fortunate enough to get pregnant naturally do not have to answer to anyone. People who can conceive naturally have no checks done on them. The form filling did seen to make the treatment even less natural than it already was. One patient was concerned that anti-depressants prescribed many years ago resulted in the GP being obliged to inform the clinic: Our GP complained that she had to tick the box on the form as the question asked by the form was such an open question. However she also indicated that to us that she wouldn t consider such entries on our medical notes (which have not recurred) from such a long time ago would affect the welfare of any child born to either of us. Two patients also made suggestions about how the welfare of the child assessment might be conducted: Could the forms be made more specific? Containing more details of the liability the GP would have legally, and how detailed the answers need to be. I think contacting the GP should continue, but should be done as a matter of course and not be dependent on permission from the patient. Feedback from clinics ELC (09-04) 04 - Annex A 2

3 General problems with the welfare of the child assessment The survey identified a number of problems relating to GPs: GP delay in or refusal to respond to the welfare of the child assessment form; Many GPs are charging for completion of the form; Some GPs complain about or are unwilling to complete the assessment form; Some GPs felt that they may not know that patient well enough to accurately complete the welfare of the child assessment form (particularly with newly registered and overseas patients); There is concern from a small number of GPs about possible legal implications of responding to the request. The survey identified a number of practical problems: Time taken to complete the assessment and the associated increase in workload and bureaucracy; Limited time with patients prior to treatment especially in situations where the patient is seriously ill and may need to be treated quickly. Respondents identified a number of patient-related issues: A number of patients view the assessment with neutral acceptance ; A slight majority of clinics reported strong negative feeling towards the assessment, with patients describing it as judgemental or unfair and meeting the assessment with hostility and anger; Many patients commented that people who conceive naturally do not have to complete welfare of the child assessments; There was also some worry that patients would withhold information if they felt it would affect their chances of receiving treatments. Contacting the GP during the welfare of the child assessment Clinics were asked if they considered approaching GPs for information to be a useful approach for welfare of the child assessments; this provoked a mixed response from the clinics. Slightly more clinics indicated that they considered it a useful approach. The main concern of those who did not consider consulting GPs useful was that the GPs did not know patients well enough to comment. Enquiries beyond GP consultation Clinics were asked how often they made additional enquiries as part of the welfare of the child assessment. The majority of clinics responded to this question with occasionally although it is unclear how many this actually represents. Some clinics answered more quantitatively with responses ranging from twice a month to once in three years. These answers are of little use without knowing how many cycles are carried out in the individual clinics. Some clinics gave the answer as a percentage of cases where further enquiries were carried out; these ranged from between 1% to 10% of cycles. Where further enquiries ELC (09-04) 04 - Annex A 3

4 were made, they were for the following reasons: Social reasons When the GP highlighted a problem If they were receiving treatment from any other specialist Drug or alcohol problems Single mothers Lesbian couples Psychiatric illness HIV positive Whenever the clinic staff are concerned Refusal to treat a patient Refusal to treat patients on welfare of the child grounds was said by the majority of clinics to happen rarely. Some clinics supplied a quantitative response and this varied between twice in ten years to twice a year, although the significance of this depends on how many cycles a clinic performs in a year. One clinic informed us that they refused one patient in roughly every 250 cycles. The following reasons were given for refusal to treat patients: Drug related HIV patient Hepatitis-B or C positive patients Psychiatric history of patient/both partners with mental health disorders Patient recently received or imminently receiving chemotherapy treatment Problems with other children in the care of a patient Male partner cohabiting with two women in a polygamous relationship Patient with a previous history of self abuse Both partners disabled Patient accused of child abuse and refused clinic contact with social services Male partner in prison Patient appeals Most patients do not appeal against treatment refusal on welfare of the child grounds. When patients did appeal against the decision, the majority of cases went before an ethics committee and the decision was upheld. In one case the decision was reconsidered after an appeal. The patients made some changes and were eventually treated. Suggested changes to the welfare of the child guidance One consistent suggestion that was made in response to this question was that it would be useful if HFEA provided standardised forms or a more defined protocol to all clinics so that all clinics are operating a consistent approach. Some other suggestions are listed below: ELC (09-04) 04 - Annex A 4

5 It is time that the legislation changed so that concepts and practicalities converge. Units should have access to criminal records bureau and be able to request these where appropriate. The DH should make GPs compliance with the act obligatory. HFEA to design a detailed questionnaire for patients to complete and then countersigned by the GP. I would like to see this issue become remit of social services e.g. adoption. Clearer guidance on what to do in cases where we have concerns & GP has refused to comply Ideally amend the Act so that we do not have to do welfare of the child I feel the GP assessment should continue as this is the most effective way I can think of. More emphasis on the patient, clinic honesty/ openness. More time, staff available to implement rigid structure to assessing welfare of the child Change from broad assessment to very specific questions e.g. i) Have you ever been convicted of a child related offence? ii) Have you ever had children taken into care by social services/ court order etc? Make these formal checks, as in adoption and then leave the rest out. Welfare of the child should be made compulsory in all clinics and for all types of treatment e.g. ovulation inductions and IUI (husbands/ partners). Proof of identity for patients should be made compulsory. Forms to be more clear and detailed for completion. The unit believes that a nominated person from HFEA should be available to discuss any difficulties in assessment processes. There should be clear guidelines of who does the assessment and the time over which this should be done taken into account when setting guidelines Guidelines and set criteria for the assessment process need to be documented and collated by HFEA..that there is a central register of people who have been refused treatment. At present anyone who has been refused treatment can go to another unit without checks being made from a central point (i.e. HFEA) That all guidelines are published and used by each licensed clinic so that the same standard for assessment is met. General comments from clinics on the welfare of the child guidance Some clinics offered opinions on the welfare of the child assessment in general. These have been included to better understand the general attitude towards the assessment from practitioners in clinics. The principle is appreciated but the legislation is ill conceived and impractical. Initially I thought it was a real hassle and resented doing it, now we have a system that works well I am not too concerned. ELC (09-04) 04 - Annex A 5

6 This is such an ambiguous process which depends largely on the decisions made by the assessors, and although we feel that we are able, to some degree, assess couples as we build up relationships with then as they move towards treatment, this will in no way be totally satisfactory. We are all aware of the responsibilities of bringing a child into the world; the need for a couple to sign a form could be an infringement of their privacy. Concluding remarks It can be concluded that a minority of people are happy with the current guidance on the welfare of the child assessment; there are many clinical practitioners who express concerns. The review is welcomed by clinics and it is essential that the views and attitudes of clinics and patients are taken into account throughout the current review of welfare of the child guidance. ELC (09-04) 04 - Annex A 6

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