Volume 8: Variant CJD
6. Diagnosis, treatment and care of vCJD patients
Treatment and care of vCJD patients
Progression of the disease and stages of care
Initial care and treatment by the General Practitioner (GP)
Referral of patient to a psychiatrist or a neurologist
Admission to hospital for testing by the psychiatrist and/or neurologist
Treatment and care of the patient following diagnosis of probable vCJD
Financial costs to the families

6.42 To date, over 70 people have tragically died from the horrific disease that is vCJD. The families of the victims of vCJD have demonstrated great courage in assisting the Inquiry by recounting the terrible and painful events leading up to and following the death of their loved ones. The families have tirelessly pursued the government for answers to the question of how vCJD arose and were instrumental in campaigning for the BSE Inquiry.

6.43 This part of the chapter addresses some of the issues that were are still are being faced by the victims of vCJD and their families, both during illness and following death. The Inquiry heard oral evidence from 15 family members on these and other issues, and many other family members contributed through written statements. We have also received material from those providing care and from lawyers representing the victims' families.

6.44 The information provided to the Inquiry by the families has been invaluable in giving a 'snapshot' of the effects of the disease on the victim, on the family and on medical staff and carers of vCJD patients.

6.45 The information has not been gathered scientifically and is not intended as a clinical study of care and treatment. The evidence provided by the families is necessarily subjective, as are the responses from hospitals and doctors. The doctors and hospitals were understandably loathe to compromise patient confidentiality and many chose not to respond to the evidence provided to the Inquiry by the families. It is often the case that things that went wrong in the course of care and treatment stay in the mind far more than things that went right. Each case is different and each family had a different experience, just as the disease progressed slightly differently from person to person.

6.46 It has been possible, however, to identify a number of similarities in the experiences of the vCJD victims and their families. This section, therefore, aims to give an overview of what the care and treatment of vCJD patients involved and how it changed as the disease progressed.

6.47 We examine care and treatment that was good as well as the all too frequent scenario of care and treatment that was less than adequate and problems encountered by the families.

Progression of the disease and stages of care

6.48 The first part of this chapter sets out the clinical symptoms of vCJD and discusses the means by which the diagnosis of vCJD by the medical profession has been made. Just as various stages of the disease have been identified, so too have there been stages in the treatment and care of vCJD patients which arise according to the progression of the disease.

6.49 The stages of the disease and the consequent stages of treatment and care are summarised below. This summary is not exhaustive and of course not every case has followed the same pattern. However, this summary reflects the experience of many of the families who have submitted evidence to the Inquiry:

1. Examination and treatment by the patient's General Practitioner (GP) following the onset of non-specific symptoms.
2. Referral from the GP to a psychiatrist and/or a neurologist.
3. Admission to hospital for testing by the psychiatrist and/or neurologist.
4. Notification of the national Creutzfeldt-Jakob Surveillance Unit (CJDSU) and a preliminary diagnosis of vCJD made.
5. Treatment and care of the patient following diagnosis of probable vCJD.
6. Post-mortem and burial/cremation issues.
7. Death certification.
8. Consideration of whether an inquest, or fatal accident inquiry in Scotland, will be held.

Initial care and treatment by the General Practitioner (GP)

6.50 GPs were normally the first point of contact for people suffering from the first symptoms of vCJD. The inevitable difficulties surrounding the diagnosis of a very rare disease were evident at this stage, according to the experiences recounted by most of the witnesses. As mentioned earlier in this chapter, the symptoms of the disease in the early stages were relatively unremarkable.

6.51 The mother of a patient described in her witness statement how her daughter 'became withdrawn, forgetful, constantly tired and lost a lot of weight. She also constantly complained about pains in her legs'. ¹ Similar symptoms were experienced by many of the vCJD patients.

6.52 Commonly GPs arranged for tests to be undertaken, and generally the results failed to reveal any abnormality or disorder.

6.53 The difficulty in settling upon a diagnosis is clearly depicted in the witness statement of a GP who wrote:

The history of the presenting complaints was difficult to attribute to a specific diagnosis . . . [The patient] could be suffering from depression but I could not attribute all of her symptoms to this diagnosis. Her neurological symptoms were not precise and did not clearly fall into any recognised neurological disorder at that time. I noted the results of her tests and the equivocal plantar response and did not feel that I was able to make a firm diagnosis . . . I concurred that nervous exhaustion was the most appropriate diagnosis that we could make at the time. ²

6.54 This inability to pin down the symptoms to a recognised medical complaint was a common story for GPs.

6.55 A GP who gave oral evidence told us that in the case that he dealt with, the patient initially consulted him complaining of 'increasing anxiety and some lowering of mood' in addition to 'a bad taste in her mouth . . . and she felt that was affecting her appetite'. ³ Counselling was organised initially. Over the next few months evidence of depression was identified and an antidepressant prescribed. ⁴ The patient's condition regressed and eventually the GP decided that he needed specialist assistance. He said:

I did not feel I could manage [the patient's] case in general practice any more. I actually said that I did not feel I had ever seen a case like [the patient's] before. I still was confident that her diagnosis was psychiatric. I was not entertaining anything else, but I felt I needed help of more specialist services. ⁵

6.56 The account given in the above paragraph seemed to be a widespread experience for GPs. It was only when the symptoms progressed from the commonplace to the more extreme that GPs either referred their patients to a specialist, typically a psychiatrist or a neurologist, or families took matters into their own hands and sought specialist treatment direct.

Referral of patient to a psychiatrist or a neurologist

Psychiatrists

6.57 Psychiatrists to whom patients had been referred reported similar difficulties in diagnosis to the GPs. The experience of a number of psychiatrists is epitomised in one particular case where the patient initially met the criteria for a depressive disorder and was prescribed antidepressant drugs. Despite this, efforts were made to find a physical cause for the condition. Subtle neurological signs were seen but were attributed to the medication that the patient was taking. The patient's condition deteriorated rapidly and she was referred for neurological assessment. ⁶

Neurologists

6.58 Often by the time a patient was referred for neurological examination, a psychiatric examination had been conducted already, without success, and organic symptoms had been identified, thus prompting neurological examination.

6.59 It was commonly during the course of neurological examination and testing that the possibility of vCJD was raised. At this point the CJDSU was usually contacted and a preliminary diagnosis of vCJD made.

Admission to hospital for testing by the psychiatrist and/or neurologist

6.60 As described above, one of the biggest problems when the first cases of vCJD arose was that of diagnosis. Because the condition had not been seen in young patients before, GPs had difficulty identifying what kind of disorder patients were experiencing and thus who to refer them to. Because some of the earliest signs and symptoms were psychiatric in nature, several patients were admitted to psychiatric wards or specialist psychiatric hospitals. Treatment on these wards, including the nursing care, appears at times to have inappropriate.

6.61 It is noted that at this stage vCJD was not usually considered to be a possibility - medical and nursing staff were treating what were considered to be psychiatric symptoms. This problem was highlighted in the report 'Patients with new variant Creutzfeldt-Jakob disease and their families: care and information needs':

The organisation and type of care provided in psychiatric units were often inappropriate for patients with deteriorating physical problems. Similarly, acute medical and neurology units found it hard to manage patients with severe psychiatric disturbance. ⁷

6.62 A number of the hospitals have described how they struggled with the care of the patients admitted to their care. ⁸

6.63 One particular hospital described the manner in which the hospital attempted to deal with the problem. In this case the hospital readily admitted that nursing the particular patient was a 'challenge' for their nursing staff. The patient would wander off if not constantly supervised. The nursing staff became frustrated by the patient's constant wailing day and night, which is now known as a symptom of the disease, but for the nursing staff at the time, seemed to have no apparent cause. A support group was subsequently set up by the hospital for the staff so that a strategy could be established to identify the patient's needs. Advice was sought from a Mental Health Consultant to establish how to care for the patient. As a result, additional nursing support was able to be provided for the ward. ⁹

6.64 A number of complaints made about hospitals were able to be explained by the hospitals when statements were requested from them in response to the families' statements. Similarly, a number of the hospitals remarked that they did not realise that the families had had concerns about the hospital care until they read the families' statements. ¹⁰ Therefore, some of the problems experienced possibly could have been alleviated if the families and hospitals had communicated earlier.

6.65 Several witnesses commented that understaffing in hospitals also created a significant problem for both the families and the hospitals. ¹¹

6.66 The family of one vCJD patient arrived at the hospital one day to find that their son had not been fed. His medical notes stated 'no-one available to feed'. Thereafter, the patient's mother ensured that she attended the hospital in order to feed her son. The same family relied on people visiting other patients in the hospital to assist with the care of their son. ¹²

6.67 In another example, a family asked nursing staff if their daughter could have more time to eat her meals as she was not able to cut up her food and experienced difficulty swallowing. The nurse apparently responded that the food trolley was only allowed on the ward for a certain amount of time in compliance with the occupational health and safety rules. The request for assistance to help cut up her daughter's food was refused as the hospital was short-staffed. ¹³

6.68 Neither of these two hospitals responded specifically to the allegations made by the families.

6.69 A common symptom of vCJD sufferers was severe anxiety. A number of the patients experienced a terrible fear of hospitals ¹⁴ and required constant care and reassurance while in hospital, ¹⁵ an aspect of care that was difficult to accommodate in practice in busy hospitals.

6.70 Generally, following referral to a neurologist, patients were sent to district hospitals for testing and assessment. Depending on where the patient lived, these hospitals could be relatively near, or far, from their home. Some patients' families were upset that their relatives could not be given a bed near to their home. Being able to visit regularly was obviously important to the patients and their families.

6.71 The experience of smaller community hospitals appears to have been largely positive. One witness said that she was 'very impressed with the staff' and had no problem with the care received. ¹⁶ The fact that such hospitals tended to be nearer home was a definite advantage. It is clear that families appreciated the chance to assist in the care of their relatives while in hospital. Flexibility of staff and systems appear to have been an important issue in this respect.

Communication and information

6.72 Communication and information appears to have been an issue of particular importance for several families. Being kept informed and having things explained to them appears to have been a priority in most cases. The importance of information was highlighted by one witness who said in her statement:

I would like to take this opportunity to especially thank the medical staff member of the National CJD Surveillance Unit, the medical and nursing staff at the hospitals at which [the patient] was nursed for their honesty, dedication and high standards of care. I have often been asked by people 'Where did you get the strength to cope with the situation within which you found yourself?' I believe that one does not know that one can handle such events until one is faced with them. However, my situation was very much assisted by the openness of the medical staff who kept me informed about [the patients'] illness from its very onset. I was never kept in the dark as to the progression of [the patients'] illness. This information-giving, I believe, resulted in reduced stress and an increased ability to cope with what was an extremely stressful situation. ¹⁷

6.73 Several families were not happy with the level and manner of information provision, especially regarding the use of drugs and the reason for certain tests such as the brain biopsy. ¹⁸

6.74 A report published jointly by the University of Edinburgh and the CJDSU in February 1999 found that several families also reported that they were informed of the diagnosis in an insensitive way. ¹⁹

6.75 Several witnesses felt that information about a possible diagnosis was withheld from them. One stated that:

If we go back to the time of diagnosis at Queen Square, we never actually came away from that hospital with a specific diagnosis. The only clue that we received was when we saw our son's brain biopsy operating notes which had in the top right-handed corner 'Reason for operation' and it had 'CJD?'. ²⁰

6.76 The same witness went on to explain how information was sought from various different doctors through the illness:

We contacted the GP initially and [the patient] was dismissed there. Then he went to the psychiatrist and was admitted to the psychiatric hospital there and there was nothing forthcoming there. Then he was admitted to the neurological department and there was nothing forthcoming there. So all the places we would have hoped there would be some information given to us there was nothing forthcoming. We were kept very much in the dark and the situation was not discussed with us. ²¹

6.77 Other families had similar experiences, and found it difficult to find any information about CJD, even after the condition had been diagnosed. One recounted how she had resorted to going to the library and reading papers on the subject. ²² Later on, especially with the development of support groups (see paragraphs 6.187-6.195), information provision improved dramatically.

6.78 An issue raised by several witnesses was that of dissemination of information about the disease within the medical community. ²³ As discussed earlier, lack of knowledge and awareness of CJD had many knock-on effects. Networking between hospitals was described as severely lacking, ²⁴ and it is possible that this may have led to delays in diagnosis, inappropriate care and further uncertainty for the relatives of vCJD victims. One witness also stated that she believed that the discovery of the new disease could have been moved forward by three months had communication between hospital doctors and the CJDSU been better. ²⁵ However, two neurologists who spoke at the Inquiry disputed this, and stated that dissemination of information was quick after March 1996. ²⁶

Involvement of the national Creutzfeldt-Jakob Disease Surveillance Unit

6.79 As outlined in Chapter 4, any suspected cases of CJD were referred to the CJDSU through the neurological network. Each patient and their family was visited by a member of the CJDSU team in order to verify the diagnosis and obtain clinical and epidemiological information by way of a standard questionnaire.

6.80 The role of the CJDSU was another area which does not appear to have been properly explained to relatives, or why it was asking some of the questions it did about the victims' medical history, eating habits, etc. ²⁷ Again lack of awareness of the disease had obvious implications for provision of information to the vCJD families.

6.81 One family complained that they felt that the doctor from the CJDSU expected them to take in too much information in a short space of time. They felt that he was more interested in obtaining permission from them for their daughter to undertake tests for research than in devising a care plan, or in assessing how the disease was affecting the family. ²⁸

Treatment and care of the patient following diagnosis of probable vCJD

6.82 Sadly, vCJD is a terminal disease. Therefore, once a probable diagnosis of vCJD is made, ²⁹ the best that can be offered to a patient to date is palliative care. At this point families have to decide whether they wish to care for their family member at home, or whether that care should take place in a hospital or hospice.

Caring for patients at home

6.83 Many of the families of vCJD victims chose to nurse their family members at home.

6.84 The families who chose to do so tended to feel that:

1. they could provide a better level of care at home than their family member received in hospital; or
2. they felt that their family member would be more comfortable at home; or
3. they could not bear to see anyone but themselves care for their family member. ³⁰

6.85 The families who chose to care for their family member at home tended to be the parents of younger victims of vCJD. ³¹ In many instances, this was only possible because at least one parent was able to give up work to care for their child full time, or one or both parents were fortunate to have sympathetic employers who enabled them to work flexible hours, to work part-time, to work at home, or to take extended leave without pay. ³²

6.86 From a practical point of view, a number of the families have pointed out that they would not have been able to cope with caring for a child or spouse on their own because they would not have been able to lift them. A significant amount of lifting is required in the care of a vCJD patient, particularly as the disease progresses and mobility decreases. Patients must be lifted, for example, in and out of bed; from wheelchairs to commodes; in and out of the bath; and up and down stairs. ³³

6.87 The evidence provided to the Inquiry has therefore shown that families who cared for their family members at home were unable to do so fully on their own. The statements have indicated that effective care required, among other things:

1. good support from the GP and other health professionals;
2. the timely and appropriate provision of aids and equipment;
3. financial support; and
4. availability of respite for the carers.

6.88 One family was able to care for the patient throughout the illness, with hospitalisation only necessary at the time of their biopsy. ³⁴ This case benefited form a supportive GP, good equipment and help from an occupational therapist, a district nurse and carers form a local hospice, illustrating the high level of care required for such treatment at home.

6.89 The issues surrounding the treatment and care of vCJD patients at home are discussed in greater detail below.

Provision of aids and equipment

6.90 Aids and equipment for vCJD victims were a very important feature of the care of patients at home and made a significant impact on their quality of life.

6.91 Examples of very useful and vitally important equipment included the following:

1. Walking frames, wheelchairs, hoists, handrails, ramps and stair climbing apparatus for use as the mobility of patients decreased.
2. Additional equipment including beds with sides to prevent falling, raised toilet seats, shower seats and air-cell mattresses.
3. In the later stages of the disease items such as incontinence pads, suction machines, oxygen, syringes and gloves became indispensable.

6.92 Because of the severity of the disease and the fact that a patient's condition can decline rapidly, prompt provision of appropriate beds and equipment is essential for adequate care. This appears to be one of the greatest areas of difficulty in caring for vCJD patients at home.

6.93 One of the problems experienced was that in a number of instances aids and equipment arrived too late to be of assistance. For example, in one case a wheelchair arrived too late, by which stage the patient was completely bedridden. ³⁵

6.94 Another problem was the provision of inappropriate equipment. In these cases equipment seemed to have been provided with little thought about its practical use. For example, a walking stick and walking frame were provided to one patient despite the fact that she could not use them on her own. ³⁶ Another patient was provided with a Zimmer frame with wheels on the front legs. This became a dangerous piece of equipment due to the patient's poor balance, causing her to fall on several occasions. ³⁷ In another example, a stair climbing machine was found to be too dangerous as the patient was unable to control her movements and would fall to one side and risked hitting her head on the wall. ³⁸

6.95 Finance to obtain aids and equipment posed a problem for a number of families. One family told how they 'had to fight to get everything'. The family approached a number of charities for financial assistance without success. Eventually, a care package came together after the family went to the local and national media. ³⁹

6.96 Another family bought some aids and equipment themselves. ⁴⁰ Many other families could not do so, especially when such items were very expensive, and only useful for a short period of the rapidly advancing disease, for example wheelchairs.

6.97 In July 1998, Irwin Mitchell, the solicitors for the relatives of the vCJD patients, prepared a paper on the provision and costing of care in the community for vCJD patients. The paper included a section on equipment and aids that had been provided to the vCJD victims being cared for at home. They noted that:

The general comment that all families made was that aids and equipment were only provided at their own request. This of course requires a knowledge of available equipment. This information should have been offered by the occupational therapist (as no doubt they do provide the information when asked) but it is our understanding that this was not the case. ⁴¹

6.98 Irwin Mitchell also criticised the length of time it took for the agencies to provide help for vCJD victims:

In our experience the average family home cannot accommodate a terminally-ill patient without being adapted . . . The average time it takes for agencies such as the Occupational Therapy Service, Department of Social Services and local district councils to assess the suitability of a patient's home and to approve the appropriate adaptations is one year . . . This does not take into consideration the problems with funding. Once again, this bureaucratic delay could be avoided with sufficient and minimum will. ⁴²

6.99 There also appeared to be an area of particular disparity between different health authorities. One family were told that it would take 6 months for planning permission to make their home suitable. ⁴³ Another explained how, although they were treated well in one region, it was very different when they moved to another county. Here no aids were offered, and equipment took a long time to arrive. ⁴⁴

6.100 However, there were also reports of excellent and rapid provision of equipment, with one patient having a wheelchair especially made for her, and a stairlift, a hoist for the bath and a bed elevator installed. This particular family said that they felt that 'everything that could have been done was done to make [their] daughter's final days as comfortable as possible'. ⁴⁵

The role of social services

6.101 As mentioned above, social service departments were involved both with the provision of equipment, and with staff such as social workers.

6.102 Again, a number of families reported difficulties with their respective social services departments. One described how they were sent a social worker who had no knowledge of vCJD, followed by a nurse who did little more than provide them with the absolute basic sanitary aids. ⁴⁶

6.103 Another family described the social services as being 'entrenched in their rules' ⁴⁷ as well as inefficiencies and delays. The rapid onset of the disease and the severity of its symptoms means that it was impractical for families to have to wait for equipment or to wait (up to 8 months in one case) ⁴⁸ to be means tested for equipment.

6.104 On the other hand, several families indicated that they appreciated the assistance the social services gave in informing the family what benefits they could claim. ⁴⁹

6.105 In the case of some of the earlier sufferers of vCJD, the families complained that they were either not offered help from social services, ⁵⁰ or there was no social services policy about how to treat vCJD patients, ⁵¹ or the social services department did not know how to help and referred the family elsewhere. ⁵²

6.106 As with the problems mentioned above regarding the provision of aids and equipment, it appears from statements provided by the families that a number of social services workers gave impractical advice relating to how to care for vCJD patients, or what aids and equipment to use. ⁵³

The role of other healthcare professionals

6.107 A wide range of healthcare workers were also involved with caring for vCJD patients at home, including physiotherapists, district nurses, occupational therapists (OTs) and other specialised carers.

6.108 The statement of one OT provides a useful summary of the goals of the care team in one case. She wrote that the OT and the district nurse initially visited the family together to avoid duplication of work. They decided that the OT would be the most appropriate worker from the social services department to continue assisting the family. The OT visited to arrange and supply a number of aids and equipment. Financial issues were also discussed. The OT took part in a discussion with the family at the GP's surgery to discuss the family member's future needs. The OT said:

My aim within the team of workers was to be as unobtrusive to the family as possible. Much of what I did was preparation to be ready to respond as quickly as possible to [the patient's] rapidly changing needs . . . I also anticipated what equipment he might need and had it ready for instant delivery, speed of response being so important in the handling of this condition. ⁵⁴

She also noted that:

It was equally important to be able to remove the equipment as soon as it was no longer useful to avoid the distress of having it in the house. ⁵⁵

6.109 She liased with other workers by telephone and only visited when necessary as there were already many visitors to the house. ⁵⁶

6.110 A number of families reported positive experiences and said that they had daily visits from home helps who 'showed a professional and caring attitude', as well as two or three visits per week from a district nurse. ⁵⁷ One family described how 'an occupational therapist with the borough council arranged everything for us in terms of grants and equipment to help us nurse [the patient] at home'. ⁵⁸ Another family spoke very highly of their social worker who helped the family 'through the minefield of what we could and could not claim by way of benefits'. The social worker kept in constant touch and remained in contact with the family after the death of their son to ensure that the family was coping. ⁵⁹

6.111 GPs also made a valuable contribution to the care of patients who were being nursed at home. In many instances the GPs continued to support the patients and their families. The families who praised their GPs in their witness statements commonly referred to the attention and support that they received from the GP during their entire ordeal. Often the support was as simple as visiting at home regularly or reassuring the family that they were available for them 24 hours a day. ⁶⁰

6.112 Families also expressed gratitude for the efforts that their GPs went to to organise and advocate for them for the provision of aids and equipment. ⁶¹

6.113 Families appreciated the availability of respite care, even if they did not use the service. ⁶²

6.114 Unfortunately, there were also families who reported a low level of support from social services. One family told us that the district nurses were reluctant to visit as they feared that CJD was contagious, and help was not offered by social services or by the medical profession. ⁶³ Another family felt that the OT and social worker were unable to cope and probably needed training in dealing with vCJD patients. ⁶⁴

Care of patients in hospitals, hospices, disabled units and other specialist hospitals

6.115 A number of families were not able to care for their family member at home, or decided against doing so. These families arranged for their family member to be nursed in a hospital or hospice facility. Many of the families who did nurse their family member at home eventually had to arrange for him or her to be cared for in a hospital or hospice as the disease progressed and rendered their family member increasingly incapacitated.

6.116 At this stage, the care was largely palliative and many families praised the caring attitude of nursing staff and high standard of care. ⁶⁵ Good nursing care removed a great deal of burden from the families, one of whom noted 'The care [the patient] received from the staff was magnificent. I could go home in the evening with the knowledge that [the patient] would be well cared for'. ⁶⁶

6.117 Many facilities were flexible enough to allow the patients to be made as comfortable as possible. For example, one family said:

[The patient] had his own room where he could have his own things around him, such as a television and his posters but most importantly the staff had no objections to our being there all the time and to providing [the patient's] nursing care. ⁶⁷

Members of another family were able to stay overnight in the hospice in a spare bed. ⁶⁸

6.118 Specialist units where staff were used to dealing with long-term degenerative or terminal illnesses appear to have provided a much more appropriate level of care, both in terms of the patients themselves and the support for their families.

6.119 Access to specialist facilities varied from region to region and not all patients were offered such care.

6.120 Care in such institutions is obviously expensive, and in several cases there was debate over whether patients were actually entitled to receive treatment. One witness described how the chairman of the health authority had commented that '[the patient] is not a cancer patient, can she not be sent home?' ⁶⁹ Another described how their hospice had a policy that 'an individual could only have a two-week stay unless . . . death was imminent', although this particular patient was able to stay eventually. ⁷⁰ The uncertainty over whether the patient would have to be moved caused obvious anxiety. Another informed the Inquiry that the owner of the nursing home where they had placed their son was aware that there was an extensive need for more disabled and terminal nursing units for the young. The owner had discussed the matter with DH but, there being 'no perception [within the Department] of a need for this type of unit', had met with 'brick walls'. ⁷¹

6.121 Indeed, several families mentioned the difficulty of finding a long-term care facility suitable for a young person dying of a terminal illness. ⁷² One of the families decided to nurse their child at home rather than in a home for the elderly. ⁷³ The hospice involved agreed that some aspects of its service were occasionally not suitable for some individuals, both elderly and younger in age. In the case of a younger person, the hospice advised that it was able to provide support in the patient's home also. ⁷⁴

Financial costs to the families

6.122 CJD is a degenerative disease and as the disease progresses, the patient becomes more and more disabled, and requires an increase in the level of care. This imposes increased costs on families and breadwinners. Costs not only arise through the provision of care but also through miscellaneous expenses such as the purchase of household appliances, travel costs and increased household bills.

6.123 DH's Economics and Operational Research Division have estimated the cost of caring for vCJD patients. Based on information on patterns of care given in witness statements to the Inquiry, they estimated that care costs ranged widely, from under £6,500 to over £40,000. Their estimated cost per patient was £20,288. However, the number of patients whose care was examined by DH was small and they were also unable to cost some aspects of care. ⁷⁵

6.124 Solicitors acting for the families of vCJD patients have put forward a statement to the Inquiry on the provision of care. They estimate that the cost of family care ranges between £39,500 and £45,500 for each family per annum. The cost represented the time spent on care by family members calculated on the basis of care assistant pay rates. ⁷⁶ We are not in a position to resolve the differences between these two estimates and have made no attempt to do so.